I started treatment v&o at the start of march ‘23, due to being very anaemic, night sweats (helped by b12 so could be menopausal) and wbc 450 ish. I was still swimming almost daily, part time working, moving house, very fatigued and lightheaded but able.
Usual complications at the start of treatment wbc pushed down to about 5 the first weekend. I felt rough to say the least for a few weeks.
Once hitting cycle 2/3 I’ve felt much brighter. I’ve now started cycle 4.
My question is I’m guessing, does the fatigue ever go? I was first diagnosed because of fatigue and the investigations done for a potential referral for cfs found CLL.
I’m feeling just the same now as I did in w&w(fatigued constantly) , I know on paper my bloods are looking really good but my body doesn’t seem to reflect those results. It makes me wonder about treatment sometimes.
I wake up with a head full of ambition, five minutes into my dog walk, first job of the day and I literally feel the energy drain from my body and I do the rest of the day with an invisible heavy backpack on my back.
Am I expecting results too early?
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Livingwith67
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I started V&O just a month before you. I'd say progress has been slow but steady - 4 months in now I feel practically like my old self, but do still get extremely tired after particularly active days.
I've found that paying attention to quality of diet and sleep makes a really really big difference to fatigue. In particular I wonder might blood sugar control be an issue? When I get a blood sugar spike followed by a crash it makes me feel like lying down for a sleep right then and there! Changing my diet in this regard was transformational.
If you're having a carb-intensive breakfast then a crash might be expected an hour or so later.
Thank you for your reply, and I’m so pleased to hear you are feeling more like your old self. I hope this continues to be the trend for you as treatment continue.
I guess I do too, but my old self was very fatigued. I thought treatment would help this but now I’m wondering if the fatigue for me was never part of the CLL. There is always a chance it’s a rubbish diet, although I always have eaten a pretty healthy diet, I’m sure there is always room for improvement. There most likely is more carbs than some as I’m a veggie. That said I don’t eat breakfast until after my dog walk, so it’s not a sugar dip from that.
For me it’s not really tiredness, it’s fatigue, my body being very heavy. My mind is alert, I don’t want to sleep.
Thanks again for taking the time to answer, and I wish you well on your journey
Hi, how long have you been vegetarian? I assume your CLL doc knows this? Sometimes vegetarians may have low B12 and other things. Has your B12 been checked?
hi, thanks for your message. I have been vegetarian most of my life 40 odd years. I take b12, and yes levels have been tested and I was told they were fine. Not sure my consultants have checked previously for iron because of being vegetarian so I’m guessing it’s on my file somewhere. I have had iron infusions on w&w but they made little difference to my fatigue. I see different Drs here most of the time not a specific one and mostly it’s the specialist nurses that deal with consultations at this stage of treatment, as no specific issues from their perspective.
I had terrible fatigue prior to my V&O, for three years. I was also diagnosed with chronic fatigue at more or less the same time as my CLL. They thought I had developed CFS as a result of multiple severe infections prior to my diagnosis.
Myself, because of the timeline, I thought it was all CLL. Mine was absolutely post exertional - if I did something I would be terrible the next few days.
After a few years I started my V&O and I’ve been hoping it would sort my fatigue.
I’m 7-8 months in and I’m definitely brighter, like you. I have some days of feeling totally happy again! I don’t have the same degree of emotional lability (ie crying at the slightest thing lol)! I can remember a string of numbers!
However I’m still very tired. There isn’t however as much post exertional fatigue , but there is still some, and I can have some good days. My friend who is on exactly the same treatment as me, and same week, has always been incredibly fit, and she is exhausted too!
So I’m hoping that when the treatment finishes that within the 6months after that I’ll see a big improvement! I’ll let you know! Good luck!
Thank you for your reply and for giving me hope. I wish you and your friend a smooth journey as you continue your treatments and I hope all of us get good results as time moves on. I will wait patiently. I’d Love to hear how you both progress too.
I am just about to start cycle 11. I would say that I am slowly improving on the fatigue side it’s something that hasn’t happened quickly but on retrospect I don’t get so exhausted after doing something extra to my normal activity.( normal means not much 😊)I hoping that even after my treatment ends I will continue to improve on the energy side .these drugs have certainly worked for me and I send you and everyone here my best wishes .
I found that the more active I was and am, the less I felt and feel tired, even though I am on the verge of anemia often. Also sugar seemed to make me tired. Since V+O I still feel tired at times and fall asleep at the drop of a hat but the above is my self-treatment.
yes, I am and always have been very active, but it’s tough doing things when your body feels so heavy. I plod on hoping it will increase the energy but it rarely does. It used to going for a swim but I was warned off doing that.
If my experience with V+O is anything to go by, press on with the activity even though it is tough at times and it is better than not doing it. If you love swimming, personally I would keep doing it despite the advice. Try to choose quiet times.
Even though treatment and CLL are very major to your processes right now, your body still works the same so I encourage you go through the same steps you would without those concerns. Even more so, because the previous is definitely a strain and requires extra from you. Your medication takes processing, it is killing certain cells and they also must be processed out of your body. You need *plenty* of protein to rebuild healthy cells. So get your diet in order. Drinking the appropriate fluids to clear dead cells and medication can also change your energy levels. If you over hydrate you will lose electrolytes and feel poorly. Venclexta can cause increased blood sugar levels so look at that--both fasting levels and spikes from high carb meals can indicate issues. If there are spikes and crashes , even very high and low ones, they may not be seen by any routine lab test and they WILL affect your energy perception. If you have ANY possibility of any infection (including fungal) get that checked out, your body cannot handle all of these things at once. Inactivity has already been mentioned, also "fix" your sleep hygiene if you have any issues with that. I don't say that you will feel "great" while you are healing, but all of these incremental things can help. I wish you the very best!
I completed my O+V regimen 15 months ago. I am in remission - I did not regain my energy until 6 months after ending treatments. Even now, I awaken with energy, but my battery is low by 3 PM. I'm thinking an afternoon nap may be beneficial.
I have just woken up and as usual go to this site first when checking my e-mail. I send all my best wishes to you all. The responses to Living with 67 have helped me as all the others on this site do.
I am about to start V&O next week. I had wanted to get myself into a good state before but owing to my husband having a bad fall (he is 77) five weeks ago and the daily hospital visiting, I am very tired. He is still in hospital.
I have found over the years that eating something very sweet, I want to go to sleep an hour or so later. I haven't been eating as well as I normally do so I am trying to build up before next week and also hydrate as advised. I wish there was an ideal diet sheet.
It is always difficult to know if the fatigue I have sometimes is due to CLL or the fact that I do everything as my husband has not really been well for a long time. I don't know what will happen when he is ready for discharge. There will be so many decisions to make and by that time I will possibly have just started the V stage. I wasn't anticipating rather naively that I would be so fatigued, I wouldn't be able to do anything.
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