Fcr not improving symptoms: Have cll and started... - CLL Support

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Fcr not improving symptoms

Kitty profile image
7 Replies

Have cll and started fcr treatment. Went to have 4th treatment yesterday. Was tired and weak since last treatment. On discovering this they have delayed any treatment for 2 weeks and will have out patient appointment with consultant in 2 weeks. My bloods are great but they reckon treatment might not be working as symptoms are much the same as before I started treatment. Anyone else have this experience.

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Kitty
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7 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Hi Kitty,

The good news is that your bloods are great! It's not at all unusual to feel the way you are now feeling after 4 cycles, or to have your remaining cycle(s) delayed. It can also take a while to recover after treatment, particularly after FCR.

Neil

GMa27 profile image
GMa27

I had 3 cycles of FCR IV in 2018. By second day my nodes disappeared. Blood levels almost normal on second cycle.If you are having oral FCR, it can be a bit different. My hematologist had me tested after 3 & I was in remission. You may be experiencing some common side effects from chemo which could be similar to ur issues before you started.

Maybe they will test you & you won't need to continue. I had scan, BMB & blood work.

Wishing you the best 🙏💕

LeoPa profile image
LeoPa

I imagine chemo is very very taxing on the body. Hopefully you will feel much better once it's over.

Teresa252 profile image
Teresa252

Hi KittyI felt worse after having the FCR than I had before I started treatment. By the time I'd finished the 6 rounds I was wiped out and yet everyone was telling me that it's great now you are finished treatment. It took me a year to start to come back from it in hindsight.

Saying that, it did its job very well, it drove the CLL underground 😂

Is that what you mean by your bloods are great?

I hope so. I guess you just need to be guided by your medical team as they know you and the results you have.

I hope you feel stronger soon.

bennevisplace profile image
bennevisplace

Hi, I see from your previous posts you had shortness of breath before starting treatment but no large lymph nodes visible. Unexplained but possibly anaemia? How is your haemoglobin now? Were you scanned before treatment? What are your CLL genetics? What was the specialist's reason for starting treatment? Were there other symptoms?

I had 6 cycles of FCR with progressive fatigue (+ nausea, constipation) especially in week 1, then 1 and 2, of each cycle. Side effects can be rough, and the fatigue can run on for months after treatment ends. That includes low cell counts and platelets. But once that last cycle is done and you know you've swallowed your last pill, you'll feel a lot better.

Salohcin profile image
Salohcin

Hi Kitty, I also had six cycles of FCR and I had a pause between 3rd and 4th cycle as my platelets were down below the recommended level for treatment. After a couple of weeks they had gone back up so was allowed to complete my treatment and 6th cycle finished at the end of October. I’m now feeling a lot better and can feel my energy levels increasing daily. I haven’t had my bloods check since I finished treatment, that’s in a couple of weeks time. My last cycle was hard work in terms of tiredness and took longer to start feeling better than i was expecting but I guess that’s the build up of the chemo over six cycles. My bloods after my 5th cycle were good and a scan showed my spleen had reduced back to normal size as it was very large prior to treatment. My nodes had also mostly disappeared on the scan. I would say hang in there as it does tend to get you down after a few months of treatment.

111853 profile image
111853

I was scheduled for 6 rounds of FCR in 2018. Inky made it through 3 as my counts dropped rapidly but so did my energy and weight. It took me about 3 months to start feeling really good and to put on the weight I lost. Hopefully you have a Similar experience.

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