FCR-12 months on.

[rsw147]

Hi All,

Hope you are all doing well.

Finished 6 cycles of FCR June 2017 and bloods are all great.

Am 51 an feel severely fatigued. Is this normal?

I have a full time job but struggling to cope

Anyone out there experiencing this?

Thanks in advance,

Robbie

[Hidden]

Robbie,

I was diagnosed with CLL about 16 months ago. (at 51) For the last year +/- I have had extreme fatigue most days. I find it somewhat unsettling you are experiencing fatigue after FCR. I begged my Hematologist for FCR the first 6 months because of the fatigue (my blood numbers are not bad, really).

I'd really like to hear from other people about Fatigue post FCR. I was hopeful the fatigue would go away after.

Scott

So fatigued this week I have to keep checking to see if I have a pulse

[casanova]

Fatigue seems to be a very common effect following FCR and other treatments. In my case it has improved given time and depending on which treatment (I've had a few). I have rested when needed and been as active as possible on my good days and gradually my stamina returns. Hope yours does too.

Maureen UK

[JigFettler Volunteer]

If you are post FCR with no evidence of CLL activity... counts, LDH, Node mass etc... then it seems odd to to blame CLL for fatigue. ?Post FCR effect... but only if fatigued continuously since FCR.

I am on FCR now... my energy is being restored in bucket fulls. Unexpectedly. Nice!

So here is the thing. If you have a symptom, be VERY careful about blaming CLL or FCR. Think about another causes... thyroid, b12 folate, iron levels, diabetes, heart disease etc. The host of conditions that can affect us all and cause fatigue.

This is where you need a Generalist Physician. e.g. GP in UK.

[Hidden in reply to JigFettler]

Hey Jig,

I ddn't know you were having FCR. I wish you all the best and hope your path is easy to walk. Please keep me updated to how you are doing.

Scott

[JigFettler Volunteer in reply to Hidden]

Thanks Scott. Are you UK based? Pre FCR? I was prepped for a difficult time on FCR. I know it's early days but am feeling normal, like pre CLL! Wasn't warned about that! LoL.

I think a dedicated WnW program could be evolved to assist us in our WnW and subsequently Chemo/New Agent phase.

How many, for e.g., know how to wash hands properly? Infection being such a thorny issue. Says me probably neutropenic again as I tap! How to optimally engage medical services etc.

How many medically trained are there amongst us? Maybe you know!

Kind regards

Jig

[Hidden in reply to JigFettler]

Hey Jig,

No I am in the USA, State of Maine (Top Eastern Corner, think Siberia). I am pre-FCR, my numbers are not bad, around 40K WBC and 25-30 ALC depending on the month. I don't know who among us wears those stylish whitecoats except AdrianUK...

Scott

[JigFettler Volunteer in reply to Hidden]

Even better, US + UK resource. I must check with Patient Power, they may well have had a conference in staying well with CLL, and after treatment.

[Senecio]

Jigfettler above has given you the definitive answer! Three months post FCR I was rather concerned that I still felt lethargic, and my memory wasn't great. I was already taking vitamin D3 (25 micrograms a few times/week), but having read up about vitamin B12 (initially on here), I decided to try that too. I started taking 10 micrograms daily, and almost at once I felt more positive and motivated. It is true that some people are unable to absorb B12 by the oral route, and they may need injections, but I thought it was worth a shot to take what is in fact a rather low dose. As B12 is a water soluble vitamin, excess is excreted in urine, so there is no known risk of overdosing on it (unlike vitamin D3). Most chemists sell B12 in much higher doses, but Boots do the low dose 10 microgram version. Incidentally, when I asked my consultant why B12 wasn't routinely tested for, she said that I showed no indication of having low B12 - but I can tell you that the supplement certainly made me feel a lot better. (Someone will jump in now and tell me that it's a placebo - but who cares!)

John

[Sucee]

Hi Robbie

Great news that your bloods are good!

I finished FCR end of October last year. I've had to cut back my hours at work; just couldn't do what I was doing before treatment. I struggled with this for a while, then I saw the light - this is my new "normal". Lots of rest still, but generally feel pretty amazing - at least much better than I did before treatment!

Best wishes to you.

Sue from NZ