Fatigue while in remission

[Ducksoup]

I'm sure this subject has been amply treated on this site, but I haven't seen a lot of posts on my specific question, so here goes.

I'm a 69-year-old female, diagnosed with CLL nine years ago. I completed a six-month course of treatment with Gazyva (omnituzumab) at the end of March. Earlier this month my blood tests revealed uniformly normal numbers, meaning I am officially In Remission. A very good thing, clearly.

Alas, the fatigue just won't let me out of its clutches. I have more energy now than I did in the last two years of my CLL experience and treatment, but I'm still tired. I walk my dog daily and attend Arthritis Association water aerobics twice weekly. I have a consulting business and work about half time, do my own shopping, some cooking, and generally take care of myself, so I'm at least moderately active.

But I'm still far more tired than others my age. I'm usually lying down by 6:00 and I sleep at least 8.5 hours at night. I've managed to go out to early dinner a couple of times without adverse effects, but that's rare. On weekends my body seems to need one entire day lying around--very much unlike the pre-high-numbers moi.

I do have arthritis, and I know that pain can and does cause fatigue. But I've been in pain before and I haven't been this tired.

I'd love to hear from others in remission after treatment, and/or from docs and other specialists with some knowledge of what might be going on.

And thanks to all of you who share your experiences so generously, to AussieNeil and everyone else responsible for making this site a godsend for the likes of all of us.

[Kenn123]

Hi,

I finished a 6 month course of FCR last March and am still exhausted. I'm back at work 4 days a week as a primary school teacher but I was hoping I would have more energy by now. I totally understand how you are feeling. It's so frustrating when you just want to get on with life.

I saw my haematologist today and she said it was to be expected and I was being too hard on myself!?

Yours in exhaustion,

😊

[Ducksoup in reply to Kenn123]

So sorry I didn't get back to you earlier. First I was getting ready for a trip to Colorado, then I was on the trip. But I was heartened to see that I wasn't the only CLL patient with this particular issue. My oncologist is delightful and caring, but always so optimistic on my behalf that I can't get the info I need about the negative aspects of my life. Sounds like your doctor is honest, if a bit shaming. Here's wishing you far greater energy in the weeks to come.

[Kenn123 in reply to Ducksoup]

Best wishes to you too. Please let me know if you hear about anything which might help.

[Ducksoup in reply to Kenn123]

When you talked to your doctor, did she say anything about waiting longer to feel well? I realized I didn't understand how you are being too hard on yourself.

[Kenn123]

She said I could be feeling tired for up to a year. I think she meant I was being hard on myself by trying to lose weight. I've put on over a stone since finishing treatment which is worrying me.

Keep well.

[Ducksoup]

Up to a year. Oh brilliant. Actually I've gone back to my acupuncturist and that seems to have made a substantive, positive difference in my energy level. Who know if and how long it will last.

Thanks for the response. And I'm always available if you feel like moaning to somebody.