Side effects CLL

[Jonah348]

It has been a few weeks since I have posted :

Feeling all kind of things :

Insomnia: sitting here it is one day without sleeping:

Depression : still doing Ok but the simple fact still worries Me:

Lost appetite : It has been weeks since I had a real meal.

Weight loss : I guess I have lost 12 pounds in weight.

Ear : guess my ears are also impacted : I suddenly hear buzzing I my right ear.

Please let me know if all this sounds familiar to you.

Jonah.

[Newdawn Administrator]

Hi Jonah,

It’s natural for many of us to never fully regain the feelings of certainty and security we had pre CLL diagnosis but enduring feelings of desperation and an inability to adapt can signify a depression. You display and describe a lot of the key indicators of depression and this is a clinical matter that needs to be addressed with your doctor. I’m not sure if you’re on medication but it could be some kind of talking therapy is needed to help you.

Looking back at your posts, I’m not sure what’s available where you are but I’d urge you to seek support to help you find some degree of emotional equilibrium. This is a tough diagnosis and there’s no shame in needing and seeking help.

You may also need to see an ENT specialist about your ear.

Best wishes to you,

Newdawn

[migirlusa]

Jonah - you are not alone. A year after my diagnosis I started taking medication for anxiety. Please see a doctor right away. Lack of sleep makes the whole thing even worse. You do not have to keep feeling this way. If you do not want to take medication then please see someone to talk to.

Pam

[Shedman]

Hi Jonah

Sorry to hear all of this. 2 good replies - depression wants airing with Dr.

Weight: were you carrying excess weight? Can you afford some weightloss? My weight within 8 months of CLL diagnosis was lowest it had been in 27 years.. But still not low - I was carrying excess and set about changing that, not least to give lymph nodes more space!

Healthy food matters - there have been times when I felt run down, and a good meal has set me back on the right track (my go to is liver and onions with broccoli.. Lots of vitamin A and C, with good protein and iron sources.)

Has CLL affected work for you? My work situation changed before I was diagnosed - looking back it was CLL fatigue that left my work suffering and client relationship unraveling.

Do you have close family or friends or anyone you have confided in?

Anyone to be able to vent to about worries and so on?

My family are either old enough to have bigger worries, or.. Well, I'm the black sheep of my family, so nil talk for many years.

Gradually I confided in a few folks - some are able to hear my CLL narrative, even ask how I am doing, without unhelpfully expressing more of their own anxiety.

The best resource in many ways is here on Health Unlocked, where a mix off sympathetic listening and informed responses really have helped me as I so slowly come to terms and find peace with this strange diagnosis.. ..but short of these options - friends or HU? I'd seek other options; once or twice, for myself and others, I have found that Samaritans were a hugely helpful source of listening.. Helping - just by listening and enabling one to think things through - to decide the best course of action.

We share a similar experience of diagnosis delay - my neck nodes were so large: I knew something was wrong [did I have mumps? was it Sjøgren's?] and I kept moaning until someone took me seriously.. (I thought the GP surgery would blacklist me.. But they were fine after all)

That was then, 20 months later and here I am, like you, all lumpy lymph nodes everywhere, in watch and wait, in the UK heatwave, suffering / surviving, trying to make sense of all the many changes this involves for my life.. What treatment might bring, for the better, and so on.

Hearing partner talk about 'not sleeping as long as she'd like' etc and I do my best to bite my tongue, not saying, You have no idea! -- my sleep involves frequently rising to pee, then drink more (yes, in spite of need to pee more, this is all about hydration), and, eventually, maybe 5am, things are cool enough that I sleep -- and I am not using any covers. Today I rose at 8:30. Not exactly a nights sleep?

I must start listening to my hypnosis audio once again, but this was easier, years ago, privately, on my own.. It was THE best way in only 5-7 minutes to switch off worries and anxiety (better at the time of a back injury than pain relief drugs) and get several hours of good sleep.. But so much I took for granted has changed; someone here said it typically takes about 2 years to come to terms with this diagnosis.

Alcohol remains tempting even as I find it hits me harder, though with treatment on the horizon, and need to maintain fully functioning liver/kidneys, I limit it to 1 or 2 pints, 1 or 2 glasses of wine.. And no doubt this is better in limiting the strongly depressive effects of alcohol.

Famous author/insomniac Waugh learned to rest in place of sleeping as being better than nothing - shut eye, if not sleep. He was correct, but I wish there were more opportunity in my days to nap in a comfy chair..

..sleep matters.

Ears: my ears have had moments.. I'd bet that a lymph node might be pressing on something, somewhere, affecting related nerves or veins or venules.. But all of this gets worse when over-tired and anxious.

I'd book a double appointment with GP (Dr) and take it from there.. Have you got a choice of Dr's at your practise or a good Dr in any case?

[Jonah348 in reply to Shedman]

Shedman,

We do not have much choice, but the one I am visiting is a good one,

And the hot nights, down here it is hot all year.

thank you for sharing.

[Jonah348]

I guess I forgot what depression is: I have experienced depression more than once in my life, I just forgot how to handle, and yes seeing the reaction I get from you it reminds me how to deal with, I can get the medication by my Doctor, will get lab test this week and see my CLL specialist on Monday.

Thanks for the support, I never expected so much support from online users, so far away from my home.

feeling better already.

Thank You.

Jonah

[BeckyLUSA]

My initial oncologist told me at diagnosis that if I was a dieter, that I should stop dieting and just eat a normal healthy diet, that I would probably lose weight, since cancer itself can cause loss of appetite and thus weight loss. In my case he was correct. About 6 months after my diagnosis, my appetite just up and left me. I had always been a foodie - lived to eat. Now I am the opposite. Have a hard time eating anything. I lost 25 lbs in about 6 months, and it is not coming back. I make myself eat because I know I have to, but it is not enjoyable anymore.

I am not depressed. Just have a depressed appetite. On a recent two week road trip, eating out three meals a day, I wasted so much food! I tried to order the smallest portions possible but still ended up not eating a lot of my food. Before this, half the fun of traveling to new places was trying new local foods, but now, it is not fun anymore, just a waste of food. I miss being able to enjoy food!

And oh yes, the ringing and buzz in my ears has gotten worse. I think sleep issues can be related to anxiety about our disease even if we don’t feel it any other way. Sleep for me has been elusive as I got older. Now I usually sleep really well, or not at all, not much in between. Like as I type this it is 4:30 am. Fell asleep at midnight and woke up at 2:00am. Have been awake ever since. On nights like this I thank God that I am retired! I cannot imagine having to go to work after a night like this.

Hang in there. It will get better as you get accustomed to your new normal.

BeckyL USA