Newly diagnosed

[stitcher66]

Hi my name is Suzanne, and I was diagnosed with CLL in October 2023. I'm at the moment on what is called watch and wait, although I have had my first visit to Haematology. My reason for joining this group is to read other people's experiences, and to find out how other people cope with this chronic fatigue, I'm still working and really finding it hard to continue and concentrate on my day to day tasks.

[OwnedByCockerSpaniel]

Hello stitcher66 And welcome to the club no one WANTS to join.

I can only really talk about my own experience.

I was diagnosed with CLL in 2017. I am on 'Watch-and-wait/Actice-monitoring'. My white blood cell is inexorably climbing higher. I have found that the slightest sort of infection: cold, sore-throat, cough, or anything similar, knocks me about.

It seems that the mutant/immature white blood cells rush to the scene, but of course, they are not properly formed and useless and just dump their contents into the blood stream by their squillions. The body then tries to clean up the mess and the muscles and joints ache something awful.

It is worse if my sleep has been interrupted for any reason.

Sometimes I can work through it. I have two dogs and they really need walking every day. Sometimes the fresh air and a bit of exertion seems to help, and I can push through the wall and feel slightly better.

Other times - which I call my lead overcoat days - I just have to be kind to myself. I can barely move off the sofa. I can scarcely think straight. Those days I just take it easy as much as I can. The feeling doesn't usually last more than a day. So I just have to put jobs off to the next day. If I don't rest, then the lead overcoat stays on a bit longer.

My guess is that, as you get used to accepting your condition, you too should be able to tell which technique is right for you.

Keep strong. And come back to this forum a lot. There is a lot of good stuff on here.

All the best

OwnedByACockerSpaniel

[Notmuchenergy in reply to OwnedByCockerSpaniel]

I’ve been on watch and wait since 2009 and the best thing for tiredness I eventually found was taking Spatone Iron drink every other day. My haemoglobin numbers suit me best at about 13.4. Lower than this and I’m very tired. I find the iron drink alternate days keeps this without thinking about it.

[EastBayDad]

Hi. I was diagnosed in January. I was very depressed and anxious the first two weeks. To address these issues, I started Zoloft, got a personal trainer, a therapist and a masseuse. I diligently swim, hike, bike ride, ski, lift weights,, or meditate one hour per day. I feel better now than I did a year ago even though I am cruising around with a 80 WBC and cancer.

[DriedSeaweed in reply to EastBayDad]

I too started zoloft when I was first diagnosed since I couldn’t sleep. Be aware it can be very difficult to quit. I’ve been trying and gave up a couple times. Doing a very slow taper now.

[Pacificview]

Hello Suzanne and a warm welcome to you. Fatigue and working are a tuff nut. You will find many posts in regard to fatigue. It is a known side effect from CLL/SLL. Best way to get the most information with a question you will have. Will most often be utilizing the search bar. You will find zillions of posts over the years on that subject. I find it very informative and fast. Your fatigue is normal and difficult to deal with when your still working. I definetly suffered from fatigue prior to treatment starting last year. For me, I retired and took naps. Two to three hour naps most days. Thats how much fatigue I had.

I did not take any drugs to try and beat back the fatigue. I will defer to others here that still worked full time for their tips on how they coped.

All the best to you and you have found a great site for info and support.

John

[esn1967]

Hi Suzanne, Welcome. I'am 56 y o & was diagnosed in November, 2022, and I'm also on Watch & Wait. To combat fatigue, I sleep at least 8.5 hours nightly. I have also stopped pushing myself to get everything done. I do have to work fulltime, so one of the first things I did was to stop cleaning my house and focus on relaxing. I do clean a little but no longer think of the housework as something that I need to do or something that is connected to me. I exist, the house is messy, these are two separate facts. My hubby is helping more, my daughter comes over now and then to sweep, occaisonally I hire a cleaner but can't afford to often. When I do clean , it happens in spurts. This morning I washed three loads of dishes before work because I had the energy to do so. When I have a little energy and want to do something in the kitchen, I try out a new recipe as that's fun and engaging in a way that mopping the floor is not.

Emily

[stitcher66]

Thank you, how do you lock posts I didn't know about it

[SofiaDeo in reply to stitcher66]

Welcome! Please spend some time looking over the "how to navigate this site" as well as other parts of the Pinned Posts. You'll get a lot of information, including how to do a Search for various questions. Over the years there have been a number of discussions about people's experiences with just about everything!

[AussieNeil Administrator in reply to SofiaDeo]

Our pinned post on Navigating HealthUnlocked healthunlocked.com/cllsuppo...

[Veggiesaredelish in reply to stitcher66]

Yes, I need to know too,lol

[Minnxy]

Hello Suzanne, I'm in a similar situation and have found this group really informative. There is a lot of advice regarding fatigue. I exercise most days, eat healthily and try to avoid over exerting myself. It does seem to get easier as you adjust to life with a CLL diagnosis. I obstinately refuse to go to bed at 8pm when the fatigue really kicks in! Take care, Adele 🙂

[Fiona1122]

Hi I am 64 on watch and wait but suffering from extreme fatigue. I am working but currently off sick as the cancer tiredness is,affecting me to do my job. Looking to retire on grounds of health.

My consultant is very supportive and wants me to do this.

Celebrate what you can achieve and not whst you can't be kind to yourself

[stevesmith1964]

Hi, If it's any comfort , I was your age when I was diagnosed stage4, asymptomatic, with 100% marrow infiltration. I had a transfusion immediately as Hb was 80 and then started O+I a week later. I was in remission within 240 day. That was 3 years ago, apart from a SCC popping up , probably related to CLL, I have been fine and monthly bloods stable. I have just turned 60 and have an extremely active live as a full time stay at home at to my 6 and 4 Yr old, (3 and 15 months when diagnosed). The key is to stay positive, I plan to be at my daughters graduation in 2044. Keep safe enjoy life, the drugs are great.

[bandit44]

Hi- I was also on the watch and wait list. It was hard to get off the couch, so very tired. It took them a while to put me on some meds. Hope you do well with the meds they give you, some do well with them, others have nasty side effects. everyone is different, it seems. wishing you the best. take care, 68 yr. old guy..USA

[Braveheart19]

hi Stitcher 66 I too am on watch and wait and really the only symptoms I have are chronic tiredness that sometimes comes over me and swollen lymph glands in my neck, which go up and down in size depending on whether I have infections or not. Other than that I feel a bit of a fraud as my wbc etc remain raised but stable. I hope your CLL remains as stable as mine. I was diagnosed in my 50’s.

[Big_Dee]

Hello stitcher66

You came to the right place, the information you will glean here will reduce your burden of worry. Blessings.

[Nucleusman]

My haematologist checked for anaemia then put me on an infusion and then daily folic acid- helped considerably with fatigue

[22011]

I don't see a share button or menu at the bottom of my text box. It just has a blue "Reply" link which I will click now.

[AussieNeil Administrator in reply to 22011]

stitcher66 and 22011, You need to edit your post to change sharing from "Anyone" to "Community only", as shown in this reply to the post "Who can seem my post?" healthunlocked.com/cllsuppo...

[22011 in reply to AussieNeil]

That option is not available to me. I have looked at all the old links and they aren't helpful. I use Safari so I tried opening this page on Firefox and I get the same thing. Above is a screenshot of what my reply box looks like. Nothing like what you are describing.

v

[AussieNeil Administrator in reply to 22011]

The option is definitely available to you with both Safari and Firefox (which I'm using now). You need to go to the 'More v" option under your post, which you'll find at the end of "Reply, Like, Save Post, Report, More v". Select 'More v' and then select 'Edit'

See the attached graphic from my earlier reference. (It's easier when you first post, but if you are still having trouble, let me know here and I'll lock it).

Neil

To edit your post, select 'More v' under your post and then select 'Edit'

[22011 in reply to AussieNeil]

Thanks for trying to help. When I click More all I see is Copy Reply Link. Maybe my posts are locked already? Though I don't remember doing so.

So now I just tried it again and I did see Edit but when I clicked on it it just took me to this response to edit. No choice to lock.

[Newdawn Administrator in reply to 22011]

Don’t confuse posts with replies you make 22011. Your responses such as this take their locked/unlocked status from the main post. You can’t lock your responses.

You have two posts and one is locked and one isn’t (denoted by the little padlock next to them.)

Regards,

Newdawn

[22011 in reply to Newdawn]

Ah, that explains it! Thank you.

[Ellieoak]

Hello Stitcher66 , Welcome to the group! I've had CLL since 2002 at age 48. I have found over the years that I have to write everything down to remember them . This might help you in your job. Stay safe , Anna

[PAgrandmom]

I was diagnosed with ccl in 2017. Although the Ibrutnib seems to have eradicated the disease, normal blood tests, the fatigue goes on. Although my age may also be against me, I doubt that I will ever have great energy. There is a group called the Spoonies - they are people with chronic illnesses. They measure energy in "spoons." Whereas a normal person may have 70 spoons of energy each day I only have 15 spoons. I wish to have my energy back but I doubt that it will ever come back. So I do the best that I can to roll with it. When I overdo things one day I take the next day off to rest. Listen to what your body tells you. Recognize the bone tiredness and take the day off. Blessing from Pa.

[fraxus1]

I would urge you to talk to your physician about clinical trials that you might be eligible for.

There is no assurance that any clinical trial treatment will be 'useful' to you, however if you are randomized to a treatment group 'you will receive a treatment deemed unlikely to be harmful, and with some reasonable chance of a good outcome. If you are randomized to a control group - then you'll receive the common standard of care but be carefully monitored, and still receive all treatment due.

We are each fortunate to have CLL at a time when many new and effective treatment regimes (tho' no cures) are available, and physicians are trying to sort out the best treatments for specific categories of CLL. A clinical trial might help you, is unlikely to harm you, and might provide a sound foundation for the treatment of others. It's a personal decision, but worthy of consideration.

As a personal POV comment 'wait and watch' seems rather unpleasant sort of lifestyle. I'd rather hold the wolf by the ears than await it's certain return.

I've no advice on chronic fatigue - but wish you all the best.

[Skyshark]

Need to be careful of that, there are still some trials out there with a chemotherapy arm. BR was removed as standard of care in UK by BSH guidance in 2022.

A Study of Pirtobrutinib (LOXO-305) Versus Bendamustine Plus Rituximab (BR) in Untreated Patients With Chronic Lymphocytic Leukemia (CLL)

bepartofresearch.nihr.ac.uk...

Time for a sharp exit.