For those who have had FCR how was it ? Did you manage to work? I have read that hair thins - did you experience that ? Sorry for all the questions xx
Hi, sorry I cannot help but please do let us know how your FCR goes and you are feeling and thinking, take care of yourself.
Hi I have just finished cycle 1 of FCR as yet my hair hasn’t got any thinner but it could be early days
Also I have managed to only have two days off work
As for side effects I’ve had nausea but tablets have sorted that out
I was a bit light headed and a tingling feeling running down both arms to my finger tips for one day only.
This might happen when my bloods are at there lowest point on treatment
Thankyou, that’s really helpful x
Welcome to our community forum. I am glad you have found a post that is useful to you and you are also helping someone else, that is what our forum is all about. Please keep posting how you are and how you are feeling. Take care.
Firstly I would say that from my knowledge of reading/speaking to others that have had FCR, people respond differently, some with few side affects while others have more.
Personally, I found the first week of each cycle fairly grim - nauseous, no energy (struggled even to shower), constipated, didn’t sleep well. Struggled to eat / drink. 2nd week of each cycle, gradually improved and by 3rd + 4th week fairly good. I did end up in hospital a few times during the first 2 cycles, after which they reduced my FCR dose as my body was unable to tolerate the high level. I would say that as the cycles go on, you recovery takes longer between cycles. Your body is taking a hammering after all!
My hair did become thinner, started losing it during the 2nd cycle, but never lost it completely. I had some spells of really itchy skin, especially during the hot summer months.
I had hoped to work between cycles - when my dose was reduced I did manage a few hours I weeks 3+4 of the cycle. But literally I am talking 3 hours alternate days! Good ‘distraction therapy’ though.
Post FCR treatment I had a scan and further tests which showed a good response to the treatment. I am now a year post chemo. Still have some fatigue and my immune system is paralysed. Have to take preventative antibiotics and antivirals, and remain neutropenic.
Hope your treatment goes well. Do talk to your CNS / Consultant re any concerns/side affects - they can often improve matters by tweaking meds etc.
Thankyou very much. I see my consultant on the 4th so will ask questions then.
Hi @SP7 - is FCR what you have been recommended for your SLL? How are you feeling about it?
Our support services are always here if you have questions or would like to talk anything through ahead of your appointment - 0808 2080 888 Mon-Fri 10am-4pm (Weds 10am-1pm) or firstname.lastname@example.org
Yes my consultant has recommended it as a first treatment. Thankyou.
Good luck, we are here if you need anything at all!
Welcome to the forum. I hope that your treatment is going well. I am pleased that your nausea is under control. I used to eat crystallised or stem ginger to help too. I am sure nibbling on ginger biscuits would help too. Best wishes x
Just spent 3 1/2 days in hospital. Weng to A&E with a cough and a temperature. My neutrophils were 0.3 and I had an infection so pumped full of antibiotics and had injections to boost my neutrophils. Due my next cycle on the 3rd, fingers crossed I will be okay x
Hi @SP7 I am pleased that your infection was picked up and you had treatment. Hopefully your neutrafils will start to pick up. Don’t forget that Bloodwise have patient information on eating well with neutropenia, available online or to order.
There are other information booklets which you may also find useful. Check out the Bloodwise website for what is available
Hi, thanks so much for updating us. I am so glad you went to A&E, I am of the opinion that the patient is often the expert on themselves and I know, and get a certain feeling, if something really is wrong. Yes, we will also keep our fingers crossed for you, please let us know how you get on. Take lots of care of yourself.
Just seen the hematologist after 3 rounds. Scan results show I am responding well to treatment. All lymph nodes are shrinking. Still need next 3 rounds, but feeling very optimistic.
Just had call from hospital and my bloods show I am anaemic and my neutrophils are low. So need to go in and have a blood transfusion on Monday so next round will be delayed xx
Hi, that’s good news, please keep updating us and also how you are thinking and feeling, we are here to support you…
Hi @SP7. There is information on the Bloodwise website about eating with neutropenia, which you can download or send for (free). It is a useful one to be able to refer to. Glad to see that treatment appears to be working
@SP7 that’s wonderful to hear that you are responding well And I’m sorry to hear about some of your blood counts. But great suggestion from @Pisces56, here is a link to our booklet Eating with neutropenia Do give us a bell if you’d prefer a hard copy
Have you been able to also get support/advice from your treatment team, with managing the anaemia and neutrophils levels?