living with cll

[Bradjase]

I am trying to deal with my disease every day. I was always very active person walking every day. I still walk but get tired fast, and experience dizziness. I am wondering if anyone else has these issues.

[jacjar1]

Yes tiredness was my primary symptom. Got progressively worse till i couldn't work through a day without multiple breaks. This was main reason I chose to treat. I'm a month in on O treatments, start V on 11/8. At this point my numbers are normal but I don't feel much better. I know it will take some time.

[Bradjase in reply to jacjar1]

seeing the doctor November 18 hope my blood work will be improved. It’s been almost 3 months since my last visit.

[jacjar1 in reply to Bradjase]

👍😄

[Dago12345 in reply to jacjar1]

I am tired quick now also. I’ve been dealing with this for approximately 15 years with no real problems until last five.

[Pickleball72]

Tired yes, but no dizziness.

[Jacksc06]

Fatigue and stiff joints.

[Northland]

I have been on Imbruvica for 2.5 years (I'm 63) and felt great within 2 days of starting treatment after being on W&W for a year and being badly fatigued for most of that time.

Now I feel quite good (we hike 5 to 20km per day) but also suffer from shortness of breath, occasional fatigue and cramping in my legs and hands, rashes on my shins. My blood work is perfect and my hematologist is happy with that and doesn't have any concern regarding the side effects of the Imbruvica. I wonder what symptoms are caused by the CLL vs Imbruvica side effects and of course aging.

[AnneHill in reply to Northland]

Have you had vitamin B12 levels checked? Its not done routinely but affects lots of things including legs. I needed 5 injections. Always worth a try. I use rehydration salts if I get leg cramps. My sodium levels are low and in hot weather or tummy problem I get cramp.

[IRN83]

I have been living with CLL since 2008, I’m currently 65, having been in chemo five different seasons with four different chemo regimens (and am currently being treated). I typically get treated for 9-12 months and then two years of W&W and treated again. I’ve only had MRD once and it too only lasted 2 years. I’ve been in and out of hospitals 5 times and had kidney cancer (and in the hospital as I write this). I have been and still am working full time.

Yes I too get tired but I don’t let it stop me. I am just slower. I always have a plan to do something fun, uplifting and encouraging. Especially at the end of the treatment cycle. I have had to lay down and screw boards together to make a ramp because I didn’t have enough energy to sit up. I have a big scar on my forearm because I fell and sliced it open while working because I was so tired. Each of these events preceded the start of a new chemo cycle. Yeah I’m a glutton for punishment. My wife tells me I don’t know when to stop (probably true).

Oh well. I just choose to keep on doing what I enjoy doing regardless. I won’t let CLL stop me from enjoying life. I hope you can do that as well. Don’t let being tired stop you, just go slower or find something different to do.

Best wishes.

[Palmetto]

Have you had your hemoglobin tested recently? One of the signs of anemia is being lightheaded.

[Bradjase in reply to Palmetto]

I will discuss with my doctor

[SofiaDeo]

The early symptoms sending me to the doctor were exhaustion (I couldn't finish a work day) and inability to concentrate/making mistakes at work. All my labs were normal except lymphocytes, but I felt so awful, I started the process of selecting treatment. It did take a few months. You may want to consider doing this, you can always put off the start if you like. But if you suddenly get much worse, dealing with insurance delays, etc. will make it more difficult. Picking a treatment, getting insurance approval if necessary, all can be done then just wait to initiate if you want.

[ibriody]

I have had a lot of problems when being on meds. I’ve gotten off pharmacy meds which had different negative on me. My preference is watching what I eat and vitamin and minerals I take

[scryer99]

Went from “150-200 miles a week on the bike” to “30 minutes slow on the stationary bike a few days a week” due largely to fatigue. I have found however that a little exercise to tolerance is better than not… I sleep better.

It’s hard though. I miss the quiet time, the endorphins, and the sense of accomplishment. But I can still get some of that, just adjusted.

Tired, for sure.

Dizziness, not as much… but I have definitely slowed up to minimize both dizziness and internal organ ouchies.

Anemia not present (counts are on low side of normal). Platelets below normal.

My doctor recommended b12 supplements and they do seem to help a bit.

[Bradjase in reply to scryer99]

I am pushing myself also. I am 71, in April went hiking with my son. It was in nys park. Climbed boulders and large rocks. I thought I would pass out, but made the 3 mile hike. I hope I can do it again next year.

[scryer99 in reply to Bradjase]

I have found that my "top gear" is reduced quite a bit. Slow, steady efforts though can be manageable. Long walks are still OK, I just need to take it slowly. The B12 did help with this.

The dizziness is more just a pacing issue. If I move too fast, then I can get dizzy. These days though internal pain levels have made it a bad idea to move too fast anyway, so the plus is I don't get lightheaded as much as I did earlier in disease progression.

[tleachhsv]

Hi Bradjase, I am 68 and have SLL on Calquence and Gazyva. I have had dizziness, when standing quickly, or sometimes when I lay down. Tired of course. I told my Dr. and he said to drink more water. I guess that is always a good idea. Good luck with your side effects.