I am in the W&W phase, am not having anemia, but have been so fatigued it is hard to get through the day. Also extremely sensitive to heat. Is this unusual?
Extreme fatigue and CLL: I am in the W&W phase... - CLL Support
Extreme fatigue and CLL
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J-girl
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Hi J-girl. The extreme fatigue is not unusual and was the reason mine was identified so early. A couple of years after I left work I read an article here about the effect of B3 on fatigue. I talked to my haematologist and she read the article and agreed I should try it. It has really changed my life - I have energy and can think again. I would suggest you consult with your doctor first. I don't know where you live but in Australia I can buy Nature's Own brand over the counter for $10 for 60 days' supply. Please consult with your doctor first though. As for heat - not sure if it is CLL related - but also experience this - it may be age related though since I'm 63. Good luck
Thanks for the input. I will try the B3. The heat is really more like the night sweats but they occur anytime!
I should have added here - the B3 was initially for my propensity for skin cancers - this study indicated it was worthwhile trying: nejm.org/doi/full/10.1056/N...
A positive side effect was that the fatigue diminished too.
Look at the pinned posts about the use of D3 too - many have had success with that but really have to eliminate other causes by working with your doc.
Hello Ge77y
I am male 67 dx 20months W&W. My next 3 monthly onco appt on 20th july.
I have routinely experienced fatigue but for past two weeks it is debilitating.
Can u help me with article or details of B3 supplement.
Are u still taking it? How much qty?
best wishes
vinnet
It is really important you discuss this with your dr Vinnet. Your dr will know if it suits you. I weigh 60 Kg so only take 1 per day but the study listed above had people taking more. My skin cancer developments have slowed down but the great side benefit for me has been a shift in fatigue levels. This has improved further since I lost 10 kgs and exercise a lot more. I do still experience fatigue especially after long trips especially after long flights. Please check with your doctor. Mine read the study results and was a little sceptical but was impressed with the outcome.
Do you mean natures way brand? How long before you noticed less fatigue, thank you
Hi Karen - it’s been about 7or 8 years now so can’t remember exactly how long. I do know if I forget to take them for a few days the fatigue starts again. It is Natures Own in Australia but brands often have different names in other countries. I but from Chemist Warehouse fir about $10 bottle.
Thank you I just started my husband on B3 twice a day, I am hoping it helps him as fatigue is his number one complaint.
That’s great Karen. It will take a little while to see some improvement. Once I started to feel less fatigued I also started walking every day. Slowly at first (2000 steps) then built up to 10000 steps a day. Some times I’d do two short walks rather than 1 long one. Always check with Dr though but exercise seems to be an important component.
He is due to start physical therapy to help with his walking and balance taking one step at a time. I read and read and read to find the latest things. I just lucked out with your post. Dr. started him on b12 shots too, per my request. I hope he gets some of his strength back. Thanks again.
Thanks, I will give this a try, as my energy level is so low. My husband has blood problems and it may help him, too.
Really important you check with your doctor as they may recommend different dosage but also can check bloods over time.
I am unable to find the link on b3 and extreme fatigue you reference. Can anyone help? Is it still helping you?
Hi BrianThe research was about reducing skin cancer which is a problem I’m facing as part of my CLL. After I’d started taking B3 for a few months the fatigue I was experiencing eased. If I forgot to take the B3 for a few days it started again. Really important you check with your doctor before you start though. healthunlocked.com/api/redi...
Hi Ge77y, thank you so much for getting back to me. Very helpful article and great post. Nice to know others are experiencing fatigue as well and I am not alone. It is tough!! I am on W&W and all my markers are good but the fatigue can be overwhelming. I see my doc next week and will be sure to discuss the B3 with her.
Here is a link to the pinned article healthunlocked.com/cllsuppo...
Hi I would also be interested in other patients' experiences of fatigue, especially in the early stages.
I am very early stage - at the MBL/CLL borderline - so my consultant thinks I should be symptom free, but I am currently off work long term with fatigue and am improving slowly as I walk about, rest, spend time outdoors, etc.
As you read through the very many posts from other members facing both fatigue at the early stages of CLL and disbelieving doctors/specialists (though not experienced CLL specialists I hasten to add), you'll find you have plenty of company. CLL fatigue is unrelated to stage or lymphocyte count in the blood. This makes sense when you appreciate that only recently did researchers find that CLL cells in the blood are in a quiescent (inactive) state and are at their most active, kicking out messenger proteins that mess with our immune system (including our temperature regulation). healthunlocked.com/cllsuppo...
It's no wonder that CLL fatigue can be likened to how you feel with a bad case of the flu...
As you'll read, many of us have found partial improvement from boosting our vitamin D3 and B vitamin levels to normal levels as appropriate (obviously under the care of our doctor) and fatigue permitting, tried exercising when the fatigue hits.
Neil
Yes - we had a useful earlier discussion and I enjoyed that link. So it's about what the cancerous cells do when they are active in the bone marrow, rather than the numbers present in a quiescent state in the peripheral blood stream?
I've been tested for Vitamin D and B levels and test results have come back normal which is good. I agree with you on supplementation - I've been taking general vitamin and calcium plus D3 supplements for some years after earlier being diagnosed with Vitamin D deficiency.
I also agree with you on exercise - standard fatigue management pattern - alternating between low, medium and higher levels of activity on about a twenty minute cycle is I believe the theory of what you are supposed to do for fatigue management. It fits quite well around housework and shopping locally on foot. Running would be a bit like going to the moon.....
Yes, it's the CLL cells in the bone marrow and lymph nodes that cause our physical symptoms...
I agree....
Hi - latest in the fatigue saga is that I have been off work with fatigue for five months and have applied for ill health retirement from my government job, but have just been refused it because the assessors and the consultant do not think my fatigue is cancer related, so think I should be getting 'treatment' for my fatigue and should get well again. Hey, ho!
My employers just want to give me a pay off and wave goodbye, which I should be grateful for, but that will leave me with not very much money to live on, and I have difficulty believing I will get well enough to get a job.
I have to supply further medical evidence for an appeal, so any thoughts on what medical evidence and links I should supply on links between fatigue and MBL/CLL? I suspect, even on latest blood test results, my MBL level is less than 4. It was 2.8 just over a year ago so only a quarter of my lymphocytes were cancerous then.
You sent some useful links last time we talked.
healthunlocked.com/cllsuppo...
Also, assessor is claiming that MBL is common - 1 in 200 of population over 45, but I think they are talking about trace MBL rather than high level MBL. Anyone got any links to material on this please?
And does anyone else know a CLL specialist in London UK who takes fatigue seriously? I really don't feel very well supported by my hard pressed local NHS haematologist who, having tested me thoroughly, has put me in the non acute boring pile and turned back to the people that are seriously ill.
.
I feel for you, struggling to overcome your fatigue without adequate medical support. It doesn't help that the assessor is correct that MBL is common and the incidence increases with age. Further, those with it are unaware of it unless it is picked up in a follow-up blood test checking why a lymphocyte count is high. It's a possible precursor to blood cancer, specifically CLL and until that happens, it's just a population of clonal B-cells in the blood that don't do much. It's when it starts moving into lymph nodes (where CLL cells create a nurturing micro-environment to support their active phase) and infiltrating the bone marrow that it becomes CLL.
This blog by Dr Sharman on MBL is probably one of the better explanations: cll-nhl.com/2013/07/monoclo...
Provided you've eliminated all other causes of your fatigue, you might be able to get somewhere with another more sympathetic CLL specialist, but I suspect they will need to prove that you have more than MBL, i.e. involvement beyond the blood supply. I presume you've had tests that show you have no swollen lymph nodes and that your spleen and liver are of normal size? If you had the SLL expression of CLL: healthunlocked.com/cllsuppo..., that should help your case. Do you have any historic blood test results that can show reductions in your platelet or red blood cell/haemoglobin counts that could point to bone marrow involvement?
I recall some recent discussion on different MBL groupings, but can't remember where. Perhaps someone else can help?
Neil
Hi Neil - Obviously, it is in the bone marrow too, as the consultant says. But a lot of my results are normal. My reticulocyte count is just slightly above normal - latest score 106.2 and previous result also above normal, but I am told that is not significant and just means my bone marrow is working slightly harder to keep the red blood cells at normal levels.
Do we know what the incidence is of MBL scores above 2.5 in the general population?
Even if we knew the distribution of MBL counts, I can't see that this statistic would do much to assist your cause. That's because those with CLL with low lymphocyte counts can report extreme, even debilitating fatigue, while those with counts 20 to 60 times normal may be otherwise symptom free. What matters is how active the MBL cells are - how many cytokines they are flooding your body with and giving you flu like symptoms.
I think your best option is to find a supportive, knowledgeable CLL specialist familiar with severe fatigue symptoms.
Neil
I agree with a lot of what you say, but do we know what proportion of the population are diagnosed with high count MBL in a clinical setting? It's much lower than those with trace MBL found in mass population screenings where we really would not expect symptoms or even progression.
You so right, that is why I am seeing another oncologist that specializes just in CLL this week. Hopefully I will get some needed help.
Here is a good paper on high and low count Monoclonal B Lymphocytosis (MBL).
sciencedirect.com/science/a...
I have had a first read of this. It is interesting - and explains some of the assumptions that there will be a lack of progression. My case is a bit different because three of my maternal relatives have died of leukaemia, one of them from non Hodgkins lymphoma, and I have had a steadily rising lymphocyte level over a decade, even though the score for cancerous cells is only 2.8, well below the 5 threshold.
Any good papers you have seen on high count MBL?
And I will try and follow up some of the references to other papers, to see what I dig up. Thanks.
One of the problems with the idea of Monoclonal B Lymphocytosis (MBL) is that it is very difficult if not impossible to separate Monoclonal B Lymphocytosis (MBL) from SLL, due to normal bood counts in both. There are also differences between familial and sporatic...
There were a couple of studies a few years ago looking at this problem, but they don't seem to have much traction...
There are some good studies from the Mayo perhaps 6-7 years ago, and they address the problem of overlap as well...
In my view its still a work in progress.
~chris
My white cells were 250,000 last year, put on chemo by mouth, got infection as white cells got to low. Now white cells has climbed to 90,000 over 2 months ago. Will see next week if they have climbed more.
You need to monitor the white cell differential in your blood count test results. This section splits out the individual contributions of the different white blood cell types that together add up to your White Blood Cell (WBC) count. Ignore the percentages unless you need them to calculate the absolute counts if they aren't provided.
When your WBC was 250,000, most of that would have been due to your lymphocyte count, which includes the CLL cells. Treatments dramatically reduces this, but can also suppress the bone marrow, so other white cell types, including most importantly, your neutrophils can drop, making you susceptible to infections. When your neutrophils drop below 1,500, (i.e. neutropenia) your risk of infection rises. If your neutropenia becomes severe enough, your specialist should be prescribing G-CSF injections or using dose reduction (depending on the treatment), to reduce your risk of infection. There's a section on staying safe when you are neutropenic in this pinned post:
healthunlocked.com/cllsuppo...
Neil
• in reply toEmilyLondon
Emily, I too experience this type of fatigue every day. Started 18 months ago...light, g0t something called Bells Palsy last April and the fatigue crashed down to stay. I was not surprised when 3 weeks later my doc told me likely leukemia and sent me to a useless Hematologist...so I had to learn, fast. The fatigue involves both BCR and JAK2 genes (chomosomes 9 bad X if I recall). Your body is being flooded with cytokines and chemokines....exactly like you have bad flu, pneumonia, etc. Both your body and mind are screaming to hide, lick your wounds. CNS stuff (adderall, Ritalin, Vivance) I found erratic at best...30% great...or take it and sleep for 3 hours. Walk 1 mile a day with my wife and no, it does not help. Worst part my numbers just are not that bad....but my life is. Plan on seeing doc next week I am not doing this W&W for 5-10 years...this is no way to live
EmilyLondon• in reply to
Yes - would you say any of the stuff to make you alert is better than anything else? I'm just sipping energy drinks and alternating activity with rest and painkillers at the moment, but it is all very early stage for me.
Cassie2019• in reply to
Will pray for you. I know we going to find some answers to help us soon.
The fatigue saga continues. They have now tested my early morning cortisol. The result is 738nmol/L compared to the reference range for this time and lab of (133 to 537). Doctor has gone on holiday, so I need to talk to another GP on Monday. I've read Wikipedia, which suggests a range of causes including hypoglycaemia, which I do seem to have problems with, and also viral infections and exposure to cytokines. Anyone else had any similar experiences? Any insights?
Neil
I have been regularly complaining about my low energy since i was dx 18months ago. Stage0. I am male66.
For past few days, the fatigue has become worse. I feel like clinching/grinding my teeth; heavy eyes;just want to lie down. Crave for sugar and coffee which seem to give a short boost. Last month i had my review and onco as well as GP dismissed my complaint.
My problem is real . I am have to travel 2mrw and i need some quick fix?
vinnet
I don't think there is a quick fix. The wider CLL community including CLL specialists acknowledge that the problem is real. In fact, severe fatigue is one of the accepted triggers for starting treatment. Are you able to find a CLL specialist or at least a haematologist who knows more about CLL than your current medical team?
Thx Neil for swift response. My onco is the haematologist. There are no CLL specialists in India.
What surprises me most is that i went on a two week holiday to australia last year in june. I did not feel weakness or so much fatigue.
Hope u saw my blood results. I am really at loss at the moment. Do not know what to do. My GP or my onco give no heed.
vinnet
This is what I am looking for this coming week, as my regular Oncologist doesn't listen to my needs. Sad. Hopefully this week will get some help for my exhaustion. Meanwhile will put up prayers for all suffering with fatigue.
Doctors seem to ignore us when we say we have fatigue. They said walk more, but that is not the answer. We can't walk more when we feel exhausted, and this may lead to a fall. Doctors don't hear us.
Neil
In past 2 weeks, fatigue has become debilitating. I am m67 dx 20months.
I will see my onco on 20th of this month. Does this mean cll progression? My blood and wbc are stable...
Any reccomendations to alleviate this rotton feeling? I am sleeping well.
vinnet
Debilitating fatigue, if it is CLL related, is a recognised trigger for starting treatment. But first work with your doctor to eliminate other potential causes.
Just an update on my fatigue almost four years on from giving up work. I have been working for two years now with a CBT fatigue therapist in London NHS. We identified using my Fitbit that I was suffering from a lack of deep sleep. This can be a big issue in hot weather. I have improved my sleeping routines and am going to bed earlier avoiding caffeine from late afternoon.
I have also very gradually improved activity levels. Lockdown over many months was good for me because the number of bronchial and sinus infections I got dropped way back because we were not seeing other people. This meant more days fit and more days when I could go for long walks in local parks. Gradually I achieved progress from getting into a positive cycle. More difficult to maintain in winter but the streets are almost empty in my part of London. And I am deep cleaning the house and doing exercises in the morning in my kitchen!
They go by blood work, as this tells a lot about our CLL. I know my white cells is climbing again and fatigue is increasing, too. So I am glad I made appointment with a oncologist that just specializes in CLL. She is a top physician. Hopefully I will get the needs I have been looking for. I prayed about this, and hope this is the right decision to get me feeling better soon.
I also struggle now with extreme fatigue as well as nausea. I am also at the MBL-CLL border. I have always loved the summer heat, but find I can't handle much now. I was recently treated for 10 spots that looked like potentially skin cancer. I was first diagnosed with high count MBL about 2 years ago.
Nausea is an interesting one. You should rule out other causes. I spent 20 years feeling nauseous in the mornings. I wondered whether it was a stress response to dragging myself to work when exhausted. But I cut it out almost overnight when I tried giving up all milk products as my sister had done. The doctors think that the problem is genetically we can't digest milk proteins. Weird but I don't feel nauseous drinking my morning cup of tea with soya milk!
The four year old post chain that has come up on the right is also very interesting - titled 'Could my fatigue be due to my CLL which is 'only' Stage A? My red cells are ok so I'm not anaemic...' Clearly we are not the only ones.
Yes, yes and yes again, l get so fatigued now and in stage one some days I have to rest after a few minutes work it's so awful Maggie
That is where I am! I do something physical for just a few minutes and it wears me out.
I too have huge problems with fatigue, wake up with it and often stays all day. I also have big problem with the heat, night and day. I have been on w and w for 10 years
I have been on W&W for 18 months and just thought I was crazy about the extreme fatigue and the night sweat episodes have moved to day and night sweats. I have noticed that ETOH makes it happen immediately so I've curtailed that and got a little fan that hooks into my iPhone lol!
I also have been on w&w for 10 years and wake up tired and the heat bothers me.
I have problems with heat, too., and fatigue. I am only good for 2 hrs. after a good nights sleep. I can't manage many tasks because of fatigue.
Hi I have the same fatigue symptoms as yourself not heat related. Will be asking my haematologist about vitamin injections at my appointment next week. Will see what the outcome is.
I surely need a boost, too.
I have horrible fatigue, in watch and wait, sometimes just getting up and taking a shower does me in for the day. And, my internal thermostat does not work at all. Heat is the worst. Am really dreading the summer here in the southern US.
BeckyL
Where are you at? I'm in Oklahoma and am dreading it too! I got a fan that plugs into my iPhone! I agree about my shower thing. Sometimes I feel done for the day after that.
I am in NC. Some days during the summer the heat affects me so badly that I don't step foot outside the house during the day. Thank goodness for the AC, but dread the summertime electric bills!!
• in reply toJ-girl
Oh thank you for this post....I swear 50% of the time my only goal for the day is a shower...embarrasingly sometimes even that is beyond me
J-girl• in reply to
Me too! I have even been letting my hair just air dry instead of blowing it dry and no or minimal makeup.
I never blow dry, self dry my hair after showers.
I experience same here in MS. Can't go out in the heat.
I have the same symptoms. Was diagnosed in 2014 and WW.
Hi J-girl. I have been in the W&W phase of CLL going on 4 years now, and the extreme fatigue at times is almost amazing. Sometimes it is all I can do to get out of bed in the morning. We live on 5 acres, where we have a good size garden, which I normally love to work in, but the heat this year is almost more than I can take. I normally loved working out in the sun, and feel the sweat run off my back, but even at 80 degrees, I almost feel myself getting ill.
I guess it has become my "new normal". I try to get my outside work completed before it gets too warm, then rest in the air conditioning when it is hot.
It was the afternoon fatigue that caused me to investigate, and led me to getting blood work, and the discovery of the CLL.
I am dreading the summer. It seems when I get too heated I also get more fatigued and actually nauseated if I try to do too much while I'm fatigued.
Yes me too it's no coincidence in my opinion,take care
Thanks! You too!
I find that I can work about 2 hrs, then need to rest. I often need to push myself to get anything accomplished.
Same here, 2 hrs. then I am zapped for the day. I sometimes take a short nap and it sometimes gives me a boost.
Swelling in my body caused my doctor to suspect a problem, special blood test I had cancer, and scan, and biopsy reveled I had non Hodgkin lymphoma (CLL), in Jan. 2016.
Hi Jgirl! My fatigue is my main symptom. I am W&W one year and my hematologist recites fatigue for CLL/SLL would be never getting out of bed! Meaning if I don't have it that bad then it's age or another cause!
That being said I saw my internist and asked for other labs. He did further thyroid testing and found I was on too much levothyroid. Hyperthyroid may give symptoms of fatigue and sweats! Now 4 weeks on changed medicine I do feel some improvement however, out of the blue I feel as if a frying pan has hit me and I need to rest. Certainly, it is important for us all to peruse any and all possibilities for our diagnosis, however as more knowledgeable replies state here our CLL often is the cause and should be recognized by our physicians.
Best of luck!
Kathy
Amen. I agree. Doctors look at us like we are the problem.
Thanks! I have had my thyroid checked and it is normal. I feel better mentally not thinking I'm a hypochondriac about the fatigue!
I think the main reason some doctors dismiss the fatigue as not being CLL related is that there are so many other reasons for getting fatigue. However if everything else checks out ok (vit B & D, thyroid, etc) then it almost has to be CLL related! I'm lucky, my CLL specialist has always paid attention to the fatigue factor and level and at each visit he asks me to rate my fatigue on a scale of 1-10 since the last visit. My heart goes out to all of you who are still working and/or taking care of your children or other loved ones. I have so much admiration for you guys who still have to do it all while battling CLL!!!!
BeckyL
I was diagnosed June 2015. W & W still. No anemia. Fatigue was awful. My local oncologist didn't address it. When I went to MD Anderson they acknowledged it was an issue for me. They prescribed Ritalin!! I take .5 mg in morning. If I need another at 1-2, I take it. This might not be for everyone, but sure helped me.
As for as heat- I am sensitive. I think I freeze my poor husband in the house and car!!
I will discuss this med with my new oncologist next week. Thanks for the info, God bless you.
Also early stage on W&W but also really struggle with fatigue & some days can hardly stay awake. Just have to learn to pace myself & save energy for work, bed no later than 10.30 and only go to Gym if not going out that evening. Developing a liking for a saturday afternoon nap !! Sometimes think I'm going bonkers so its good to read here that it is not just me .
I was diagnosed in 2012 during a work-up for fatigue. I was stage 0 and WBC was only 15. The fatigue progressively worsened until I ended up on long term disability. All other labs were normal and no other cause was every found for my fatigue. All my vitamin levels were totally normal and I take Vitamin D, B3, and B complex. At age 63 I was unwilling to give up my previously very active life and my career. Fatigue directly attributable to CLL is an indication for treatment according to iwCLL guidelines. Now that non-chemo options are available I pushed hard for treatment. If chemo was my only option I would still be on W&W. Fortunately my insurance covered Venetoclax and I started treatment December 2016. Before my Venetoclax dosage ramp up was completed my labs were entirely normal and there was a marked improvement in my fatigue. I honestly didn't realize how tired I was. I am feeling tremendously better and enjoying a full life again.
I'm am not familiar with the Venetoclax but am encouraged it worked for you and will study up on it!
I hope this is a answer to my prayers, will ask my new oncologist next week. I feel I am the point of treatment again. Thanks, hope you a blessed day. Stay well and safe.
Venetoclax was a miracle for me. I've been off it for a year now and I'm still in remission and living a totally normal life. My CBC this week was perfect. ALC 0.8. I wish you well! Many blessings...🙏
And do try high-quality acupuncture. Really helps me.
I was diagnosed 5 years ago at the tender age of 48.
Fatigue is my main problem to the point that it has stopped me in my job. Now under WW, my haematologist argues that the fatigue I experience is not CLL-related as I have no severe anemia. Yet there is no other explanation.
Vitamins and supplements have made no difference to me so I take a nap the moment I start "fading", which is every day, and in between I aim to be as productive as I can be. Exercise is good and I find that I need to force myself to get out there and run or cycle otherwise lethargy sets in.
What an act this has to be!
Live for good, Lapo
This is pretty much how I feel. We close. Our clinic after 30 years for me, not my husband. I just have not been able to keep up with my life and work. My Oncologist doesn't seem to hear me about it.
In the absence of formal recognition of fatigue as a symptom to treat, resignation settles in and a "new normal" is established with a constant oppressive sense of feeling "under-powered" as the background of all activities. Chocolate, anyone?
Not sure I could even get onto my bike. But I shock my doctors when I tell them I am on Monster energy drink if I need to do anything big like get on a train across London. That and drip drip tea drinking.
Chocolate, ha ha ha, it is an answer sometimes for me.
I like your approach! How are you doing?
J-girl,
I was diagnosed about 9 months ago and am 44 now and on W & W. I just way my oncologist and told him about my fatigue and his response was since my numbers were still low it could not be the CLL. I can still function but after I come home from work I am exhausted. Not sure what to do should I see a specialist would they understand better (anyone that can answer please jump in)? Anyway it is just nice to see that I am not alone and not crazy.
WaitingPatiently
That's what I thought too! I felt like I was being a hypochondriac!
Not crazy. Not crazy at all, just very courageous.
You are not crazy. Asking for help is real.
Hello J-girl, I am interested that you have found difficult with heat. Each time I have mentioned to my consultant that, although I do not get night sweats very often, I am still affected by heat at any time during the day. I break out into a sweat all over and this can be during the hot summer weather or in a crowded room that gets hot. My consultant seems to always dismiss this and says no, it is only night sweats caused by CLL.
Yes, I was in W&W for 10 years until treatment started this February (I am currently approaching cycle 5 of 6 for FCR treatment). But I was feeling fatigued from the beginning. In fact for about 4 years prior to diagnosis while I was still at work. I still remember my boss saying to me "you must pull yourself together" when I was struggling with the fact my Mum had just had a stroke and I was her main carer, and I had loads of work responsibilities and I did not feel well! Very supportive! Was so glad when I took early retirement!
All the best,
Holly
It is frustrated to feel like you oncologist dismisses your concerns, but I feel that way too. He usually just reviews the lab and not much more sometimes.
• in reply toJ-girl
You absolutely need a new doctor. Dartmouth Hitchcock almost killed my wife 20 yrs ago...world class neurosurgeon, her issue no big deal...one "quick surgery" became 5 in 3 years and a final at Beth Israel to fix all the damage. Doc don't listen to EVERYTHING YOU SAY, well they gotta go, period.
J-girl• in reply to
I am considering MD Anderson. My husband is going with me on my next appointment in a few days and if we don't get results will try MD Anderson.
• in reply toJ-girl
Wish I was near MD Anderson, they are soooooo cutting edge and publish beyond star trek technical papers and trial results. Extremely impressive...I would drive 250 miles to go there
J-girl• in reply to
We are 8 hours away. My doc did mention coordinating with them so might be my best option to have them come up with a treatment plan. I have curtailed my activities so much I am really frustrated. I used to work full time, jog, shop, etc. and now I just do what I have to do. My husband and I closed our clinic so I could get more rest.
• in reply toJ-girl
I understand, trust me. I feel lazy and my fantastic wife 0f 23yrs is carrying most of the load. I never understood how someone like her could love someone like me....but now, I want her to save herself FROM me...terrible way to feel
Cassie2019• in reply to
I understand how you feel. Arthur does so much for me and he has health issues himself. He is 3 years younger and has many health issues. I feel like he doesn't need a person like me. He only smiles and says he loves me, but even though he does, when is enough enough.
Arthur want me to go to MD Anderson. I may consider if the new oncologist does seem interested in helping me. I am 76 now and they rub us off as they have no interests in helping us. I want to have a few good years again and know I can with the right doctor that has interest in me.
Mine just looks at report, then says your white cells climbing again. Not concerned about my level of energy.
bkoffmanCLL CURE Hero
Fatigue is under recognize and under treated in CLL. Make sure your thyroid and full blood chemistries are OK. MDACC is doing a trial with JAKAFI with good results. I have used modafanil off label with good results. Stay strong. Brian
JAKAFI ,Ruxolitinib, is a very expensive drug, more than Imbruvica (ibrutinib) and while the safety profile was OK apparently at MDACC study, the Sunnybrook trial with Dr. Spanner and the Spanish trial saw problems with anemia and thrombocytopenia.
haematologica.org/content/h...
Sunnybrook in Toronto, will be opening a Phase 1/2 trial combining Jakafi with Imbruvica (ibrutinib), as a CLL treatment, not a fatigue control.
How are you on the modafanil now? I hadn't heard of this until I read this and looked it up on wikipedia. What circumstances do you use it in? Do you get headaches?
I feel I've been tested for most things including FBC, thyroid function, reticulocyte count (slightly raised), infectious mononucleosis, ferritin, vit B12, , sodium, potassium, , chloride, urea, creatinine and other liver and kidney function, LDH, glucose, haemoglobin, CRP, T4, TSH, Vit D, Immunoglobulin A, G, M. Nothing else that offers any explanation. Got any suggestions?
I am curious about the modafinil and its effects - do you just take it for special challenges or on a daily basis?
I was diagnosed with CLL this year at stage1. Fatigue was a major symptom and, looking back a few years, fatigue has been hovering over me for some time.. Eg. I had struggled with or given up fighting over some workplace conflicts (persuading management to do their bit) - which is unlike me. I just did not have the energy to pursue things, to fight my corner, nor to 'push water uphill' .. and some clients deserted me. Relieved of conflict and stress, my lymph nodes swelled and here I am..
Fatigue
If I understand correctly, in purely simple descriptive terms, part of the fatigue issue arises because our deficient immune system detects faulty/tumour blood cells and thus gives out relevant fight signal -- "Alert - all immune systems/cells to work!" -- but our immune system cannot proceed with the fight.. The signalling repeats on a loop, and these signals deliver a sense of fatigue - no different to fatigue we feel during previous infections before we got CLL, where a cold or flu leaves us drained of energy - but with CLL limited or no immune battle takes place.. All we get is fatigue.
When I read about this, on this forum and elsewhere, I determined that I would make life harder for the tumour cells (naive optimism was upon me). My main weapons (as I understand things) include, to varying extents and with debateable usefulness, curcumin, green tea, infrared sauna, high fat low carb diet, improved circulation (of oxygenated blood) through exercise (and possibly through taking flaxseed oil mixed with cottage cheese as protein source for better absorption) wherein cancer cells don't like oxygen..
..with a 6 week run-up phase (the period of getting better acquainted with implications of CLL diagnosis) I started my regime..
Perhaps 2 stones/28 pounds/15KG over weight, for better or worse I lost 1 stone in about 8-10 weeks, but the fatigue mostly stopped..
Now, a month later, after relaxing my approach, I have gained a few pounds and - subjectively? - fatigue is more regular. I also have 'tendonitis' in my arms from fingers through shoulders.. Maybe this is CLL related bone pain? I cannot tell. But the relief from fatigue was good, and I am drifting back towards a reduced carbohydrate diet.. But I'll be more intermittent this time - perhaps 5 days on, 2 days off, moreorless.
Not that my experience will necessarily repeat, nor that this is necessarily something that will work for someone else -- all normal provisos: one approach does not work for all, etc.
That's all very interesting. How are you three months on?
From others personal experience would a CLL specialist be better for recognizing and treating our fatigue? I am just wondering if my local oncologist may not be familiar with this as a specialist. Thanks
I think a CLL specialist is more likely to be experienced with the fatigue of CLL.
I agree!!
Thanks! Good luck to you and your wife.
I have been reading all the replies regarding the fatigue and heat intolerance issues, which I also have been experiencing for the last 4 or 5 years now, and want to relay to you all that the oncologist / hematologist that I see referred me to a naturopathic care provider to address the fatigue and immune deficiency issues. I have been seeing her for about 3 months now and she is addressing my "gut" concerns first as I have had lots or re-flux and heart burn problems all of my adult life. I have tried many if not all of the "home remedies" with little improvement. This naturalist doctor has suggested that I try bone marrow broth to see if it helps the fatigue and I was wondering if any of you have looked at the bone marrow supplements. I haven't gone that route yet. I am using a GI Repair powder, 3 times a day and 30 drops of Scots Pine Pollen 3 times a day for the fatigue.
I can't say that I have seen major improvements, but am sleeping better and the acid re-flux issues are some better. I do have to really watch the sweets and breads that I love so much. 
That's interesting. Are you in UK? Whereabouts? My local hospital just looked astonished when I said people with CLL in US were being prescribed Ritalin.
I am not using that, but if it works for fatigue I want it, right???
Hi J-girl, obviously you are not alone as I am not alone. Fatigue is the only symptom I experience from my CLL diagnosis since 2 years ago at age 48. I am w & w. What is puzzling is that my numbers are in range and my doc does not seem to think the fatigue stems from CLL. Do the docs not realize that blood cancer and cancer related fatigue are directly related? Do they not recognize that this is a symptom that many of us experience? I just think they dont know how to treat the fatigue. I will learn to accept the fact that I am tired a lot but it is not easy especially cause I am only 50 years old. I can also try and change my lifestyle but when you feel fatigued it makes it more challenging. I have empathy for you all. Hang in there.
It is frustrating! I literally have changed my lifestyle around fatigue. More breaks etc.
I want a doctor that can relate to my fatigue and get me help, hopefully soon.
You will. If you live in Southern CA. Near the city of Hope cancer center they have CLL experts there. My doctor put me on calquence 100mg twice a day and it seems to help with the fatigue. However, I still do have the days where I am fatigued especially after over doing it the day before. Keep the faith.
I sometimes feel like I am burning up in the inside, but my outside body is cool. I guess this is normal for CLL. It is bad in summer months, and in winter I can't wear thick clothes, as in apartment I am sweating. It got bad year ago and they put me on a chemo pill, first one caused problem with my heart and then changed. A month later in hospital, as liver enzymes climbed to the roof, liver, spleen, and glands over kidneys swelled. I feel like I am getting back to where I was last year, and scared this will happen once again. I am going to another CLL oncologist for second opinion next week. Will keep you posted to see what's out there to help us suffering with this. Have a Blessed day.
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