Fatigue

[juli65]

Just been to see my hematologist 2 month check up mentioned being tired lethargic all the time can't work anymore been like this for the last 6 or 7 months totally dismissed it I feel like I'm banging my head against a brick wall been on w & w 6 years up till last year led a fairly active life running a pub etc very frustrating

[holly2]

I think you will find you are not alone in this! I do not know why the consultants just dismiss fatigue as a side effect of our condition. Mine even suggested it could be my age once … I always get a copy of the letter the consultant sends to my GP to keep tabs on what is being shared about me. She put in the last one "... she feels a little tired …." that made me cross, I feel a lot tired thank you! This to be brought up again at my next check up which is 12 June.

I feel good when I first wake up in the morning, on the whole, then go downhill and by the afternoon feel lethargic and not wanting to do anything, no motivation or enthusiasm either. Then I get cross with myself if I don't do the jobs I want to get done! I suppose they dismiss fatigue because there does not seem to be a lot we can do about it!

I am currently in remission after 5xFCR rounds in 2017 but my overall results are now about the same as before treatment, except for lymphocytes of course which are now lower than they should be at 0.6.

Can't win.

All the best, Holly.

[juli65 in reply to holly2]

My actual Gp as wrote to the hospital saying he thinks I need to start treatment and I feel exactly the same not to bad when I wake up but an hour or so later no motivation or energy to do anything and it's so debilitating after being such an active person

[holly2 in reply to juli65]

The only thing is, you don't really want to start treatment before absolutely necessary. Fatigue wise, I am no better after treatment, if not worse. Of course, you may have a different treatment to me and how we all react to treatment, is different again! All the best.

[AdrianUK in reply to holly2]

Hang on Isn’t the fact your lymphocytes are low excellent news and the results you were looking for? Did FCR change your fatigue levels at all?

[holly2 in reply to AdrianUK]

Yes, you would think having low lymphocytes would please me. But you do need a certain number of them (healthy ones that is) to make the essential T and B cells to fight pathogens. Mine are lower than the level needed so I am open to viral infections and I hoped after treatment I could resume a reasonably normal life not still have to avoid crowds, colds and flu etc. as I did before and during treatment. Most people seem to only take Aciclovir and Cotrimoxazole for 6 months after treatment as a precaution but I am still on them 2 years later. Yes, the fatigue is worse than before treatment as all my results are lower than previously on w&w.

[AdrianUK in reply to holly2]

Has anyone checked your CD4 levels? Some experts are comfortable stopping at least the cotrimozazole if they get to a reasonable level. And what about IVIG do you need that?

It’s a tough one isn’t it. Thing is even with the newer treatments the better they are at killing CLL the better they are at killing lymphocytes.

I just tell myself my so called “good” ones clearly weren’t doing a great job even before treatment so they had to make a noble sacrifice.

I am certain that without treatment I would have died probably by now or soon after. So I guess i will take life but with an impaired immune system.

[juli65]

Thankyou makes me feel better that I'm not the only one think I may try for a second opinion at another hospital

[studebaker in reply to juli65]

That is excellent idea and I wish you luck with different doctor

[AdrianUK]

I sometimes talk about a crapometer....and really my life for the last two years has just been varying degrees of crap. For sure the crap level is falling at the moment but rather too slowly for my liking! And I fear that it will settle at a level that is still not compatible with a normal life..!

[DriedSeaweed in reply to AdrianUK]

I googled crapometer to see if I could find one. Sure enough you can.

[Awksom]

Has your fatigue gone away or reduced substantially? My fatigue is almost all encompassing like yours. A bad double pneumonia (6 days in ICU) has delayed any treatment although, like you again, my numbers are relatively good. 13q, Unmutated.

[Lily_Pad_Master]

Great advice, Scottxxoo! As you may recall, I was fortunate to have another doc who found good cause to start me on Adderal as my fatigue reached its zenith. That really saved me until treatment started.

[Lavruch]

I'm including a post about CLL Related Fatigue, in case it is helpful: cllsociety.org/2018/09/cll-...

This topic is also being discussed at an upcoming webinar, please see this link for more information: cllsociety.org/psychology-d...

[juli65 in reply to Lavruch]

Thankyou my haematologist just dismisses it point blank so frustrating x

[AdrianUK in reply to juli65]

Run. Do not walk. Run as fast as you can to a real CLL specialist. They will understand that fatigue is an integral core symptom of this disease. If someone doesn’t understand that they should NOT be treating CLL patients. Let the oncologists treat their breast and bowell cancer and find someone who is running clinical trials in this illness (as you may well want to be in one some day) and who actually gets it.

[Lavruch]

I would also like to include a list of CLL expert physicians in case you would like to find a specialist near you. Please see the list here: cllsociety.org/toolbox/cll-...