SO, SO TIRED

[duffymcgrif]

OMG - I can't even spend 10 minutes pulling weeds from my flower beds, without feeling exhausted. I'm too tired to even sit down and cry. Any words of wisdom, suggestions, how do I get my energy back.

[Cllcanada Top Poster CURE Hero]

Sounds counterintuitive, but daily regular exercise, like brisk walking or a bike ride, swimming etc., has helped many with CLL.

Learn your limitations, and try not to push beyond them...

You are dealing with a misplaced sick response due to a wonky immune system. In my case my CLL sick was terrible for about 3 years, but as CLL slowly progressed the fatugue began to lift. Post initial treatment it has never returned... not sure why...

Some patients report help with drugs like ritalin and modafinil, but it is hard to get outside a CLL specialist doctor... from my experience.

~chris

[Newdawn Administrator]

Hi duffymcgrif,

I find it hard these days to give advice or suggestions to fellow CLL'ers on Ibrutinib because it's hard to know to what extent the drug is implicated in side effects. We hear of such a range and even the medics seem to be still collating side effect data. From what I can see from your previous posts, this must be about your 8th week on ibrutinib. Has the fatigue increased over this period or has it always been a feature?

You seem to be doing all the right things and presumably have had all the necessary vitamin/thyroid levels checked? Is your haemoglobin at a reasonable level and have you had your B12 checked?

Debilitating fatigue is just awful and I hope you can find some answers soon.

Regards,

Newdawn

[duffymcgrif in reply to Newdawn]

Thanks Newdawn. The extreme fatigue has just hit me these last few weeks. But good news yesterday. White cell count went from 196k to 180k. Perhaps I'm getting to the downside now. All lymphnodes have shrunk. Now I'm on Alliperinol for high Uric Acid and just so sick of water, water, water. Crossing my fingers.

[maggiesgrandmom]

I am so sorry, and I feel for you. It seems like it is bad for certain periods and then better. Keep trying. Try the B12. Take long naps but then force yourself to get back up and pull more weeds. Will be thinking of you and praying.

[duffymcgrif in reply to maggiesgrandmom]

Thanks Janicelee. Gives me hope that better days are to come. Just heard good news yesterday. White cell count went from 196k to 180k. Keeping my fingers crossed it will continue to go down.

[maggiesgrandmom in reply to duffymcgrif]

Wow, no wonder you are tired. Hopefully the downward trend continues!

[Safta]

I empathize completely and agree with most of what said above. My advice is not brisk walks but short, manageable walks with an aim, (once round the block, to the park and back). I found that at first these were a challenge but slowly I could do them without needing to stop. Then aim a tiny bit further.

Good luck duffymcgrif, you'll be giving US advice soon

[duffymcgrif in reply to Safta]

Thanks Safta. Saw Oncologist yesterday. My white cell count went from 196k to 180k. Seems I may be finally going to the downside. I asked him about tiredness, mood swings, depression, anxiety and he more or less "shrugged". I guess that's his way of saying "deal with it". I also asked if I will be on Imbruvica for long or if the dosage will be dropped. He said "no". All I want to know is: when the cancer society no longer will give me "help", do I just bend over and kiss myself "goodbye"? I certainly can't afford $1000 or more per month for my copayment for the meds. Not going back to work at 71 yrs of age.

[Safta in reply to duffymcgrif]

They all shrug, it's their way of saying "have no idea what to tell you". As for the monetary part, my heart goes out to you. I am not there yet, but have no idea what I will do when I am. I am 62 and retired because I am simply too tired to stand in front of a class any more. Luckily my husband still earns so we get by. But it's not going to last for ever, and pensions are a joke.

Good luck, we all need it (or prayers!)

[MrMidnight]

I have been taking a new-generation Ibrutinb (BGB-3111) for 16 months. For the first eight months I was very, very tired and could barely sweep the kitchen floor let alone walk anywhere. I needed my partner to push me in a wheelchair to get along the hospital corridors. The docs told me to push myself harder but I was so thoroughly tired I couldn't do anything (and it was slightly annoying to be told to try harder... in fact, at one point I said: "I used to hike and bike and walk. Don't you think I would be walking everywhere if I could?"). Then the fatigue lifted slightly and I could walk 300m a day and stay up later. Now I can walk 800m. Fatigue is very hard to cope with because it affects everything, including mood. I hope you get a break soon.

[virdieblue]

"Too tired to cry" is such a sad an poignant description. Hoping for improvement for you.

Virginia

[Hidden]

I've seen ads about green tea extract, but now I've seen that it can affect your liver so I'm afraid to try it. I took milk thistle and that also affected my liver, so stopped taking that. I was ready to try the green tea extract until I read the article about possible liver involvement. Never know what's true!

[mgh348 in reply to Hidden]

Yes, if taking green tea extract, tracking of liver enzymes is very important.

[Hidden in reply to mgh348]

My liver enzyme count is on the high side of normal, so I have to be very careful. The only paid med I can take so I'm told, is Tylenol and that does raise your liver enzymes. It raised mine. I can't take aspirin because of possible bleeding problems with Imbruvica, so my choices are liver problems, bleeding, or stay in pain. Hmmm, nice choices!

[walkingspirit33]

I agree with others that it is a learning curve to discovering your limits. For me it was hard at first; I mean I don't look sick nor feel really sick...until I hit the "wall" so to speak. I have learned that I am not going to recover quickly from pushing beyond my present limits.It is sad..I know,but it will take me so much longer to recover physically .I suggest do what you can ,don't push yourself as you may have before.You will find that with taking your time and some patience you will accomplish more ,instead of being down for longer periods because you pushed yourself to hard.

[Curious12]

I am unsure of your situation however two possibilities are exercise and diet.

Given your levels of exhaustion, I'd suggest starting with small quantities of low impact exercise done regularly. Don't exhaust yourself when doing it. Perhaps a short walk down to the end of the street and back. Do that maybe twice a day and then slowly ramp it up over a period of a couple of weeks. The results won't be instantaneous but they should gradually become noticeable. You could also vary the exercise. Maybe buy some 1 or 2 kg dumbbells and looking at exercising with those in your home. There are any number of upper body exercises you can do with dumbbells and with that sort of weight, you can't really injure yourself. Once again, don't exhaust yourself and start with only short bursts of exercise followed by rest.

The other aspect is diet. Where possible, stick to fresh fruit and vegetables for breakfast, lunch and tea. There are any number of recipe books out there that provide ideas for healthy meals. Maybe also switch from eating three meals a day to having multiple small meals each day (i.e. same quantity but more regularly and in smaller portions). Take your exercise about 10 minutes after a meal when your blood sugar is up (i.e. more energy in your system).

[maggiesgrandmom]

I hope you are feeling better today.

[SofiaDeo]

Hi, I M a former Oncology Pharmacist who has a really bad (17p del, TP53, unmutated plus other genetic defects on FISH) disease state, who responded to subcutaneous Campath & was in remission for ummm 4 years....physical & emotional stress pushed me out of remission. So people are correct in saying be judicious about what you "push" yourself to do. Now on Imbruvica, until the house can be a "clean room" again for a repeat Campath treatment. Anyway, there is a LOT of new research out about how our diet affects us. And a typical Western diet, 3 squares a day, is NOT in anyones best interest IMO. I was supposed to die, everyone was "surprised" I responded to Tx, everyone talks about how I dont "look ill" (whatever that means) and I am convinced my diet is one key factor. Sugar is your enemy, avoid anything with added sugars. I personally eat berries, melons, apples & avoid bananas, but that might not work for you. Beef contains arachidonic acid which is inflammatory... but everyone needs to find their optimum tolerance (I became anemic trying to go vegetarian & iron pills just made me sick). Fiber is good for your gut bacteria, but again.....everyone is different in what they can tolerate, at least initially. I mean, there was a story I read in college of someone who died drinking too much water...electrolyte imbalance. Anyway, There are a few simple blood tests, homocysteine & C-reactive protein (often used in Cardiac patients) that indicate the level of inflammation in Your body. I guarantee you, people suffer more physical ailments when their body is in an inflammatory state. Avoid chemicals, preservatives, "natural" flavorings....there are enough poisons in Nature without exposing yourself to man-made ones. Avoid chemicals in your house/environment: lotions, cleaners, soaps, etc. Get air cleaners, even if only for your bedroom & the room you spend most of your time in (try not to stay in bed when daytime tired; bedsores result from pressure in same spots over time, your couch or chair or guest bed will have slightly different pressure points). Filter your water to the extent you can (in rental apartment, I had shower filter & one attached to kitchen tap). As far as exercise--yes it is good, but find what works best for YOU. And that will change weekly, monthly, seasonally. I have extreme fatigue, but still have muscle mass because I do isometrics lying in bed/on couch, rotate my feet at ankles, point & flex... it's great to read everyone's opinions since it gives us ideas on what to try, but don't get discouraged if any one thing doesn't work, just move on to the next. As you learn to listen to your body, it will tell you what you are doing right & wrong. --And it changes over time, so what works "now" may not work in a year...and vice-versa-- For example, maybe it's too hot/cold/humid/dry/windy when you go out to weed your garden & that exhausts you more than choosing a different time would. I personally belive God/the Universe/our Maker, whatever you want to believe, has us here in this disease state to experience a different lifestyle...remember things you used to do with pleasure instead of pain, as a passage in your life, like childhood, and seek the pleasures of this new lifestyle. It is challenging, but focusing on the positive, on what you Want (instead of focusing on your fears and frustrations) will bring peace & happiness. "Hey! This new protein bar I tried makes me have less (muscle pain, stomach upset, whatever...)--Hey! Xeriscaping lets me enjoy gardening with less work, new plants to look at....Hey! I dont sweat as much, but feel mentally happy doing yoga instead of playing racquetball like I used to love..."