Start FCR next week advice please: Hi All! Im... - CLL Support

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Start FCR next week advice please

Shirty78
Shirty78

Hi All!

Im 40 was diagnosed with CLL 3 and half years ago.. Starting FCR next week, any words of advice would be much appreciated!

I plan to work during treatment,really do hope its not wishful thinking and I can do it need the money. I know everyone is different, is there anyone out there that pulled up ok after treatment or is it as scary as i think??

Thanks in advance guys! ❤

14 Replies
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My advice is if you are still drinking moderately or occasionally, stop now! Your liver will thank you for it. (If you are a very heavy drinker, you need medical advice to stop). Otherwise, I was treated a year ago, ending in October. I feel great now, and at my last blood test, everything was good.

Good luck.

John

Shirty

Yes we are all different but FCR is still the gold standard for treatment if you have the correct genome results and are fit based upon the check lists.

You are certainly young enough for FCR.

I had FCR in 2015 and it worked very well, in so much, only three sessions were undertaken as the cocktail did its job and my bone marrow took 8 weeks to recover after the third session. I’m back in Watch and wait with only slight increases in bloods after 3 years.

Many have less than the planned 6 sessions so go with the flow.

Remission of 10 years have been common with FCR.

Several bits of info that may be useful.

Firstly follow the guidance given by your medical team. Drink plenty of water as directed.

Secondly FCR has a cumulative effect so there’s a chance that as the sessions progress you will find a few new side effects emerging.

Thirdly expect the first week after treatment to show some side effects such as fatigue and maybe sickness but taking anti sickness meds will help this.

Fourthly many can continue to work through treatment but be aware of the possibility of picking up viruses etc from work colleagues. Remember you will be immunocompromised due to the treatment.

Fifthly it is essential you keep in touch with your specialist nurse. Attention to your temperature is essential. They will inform you of the top temperature after which you must contact them or report to hospital (35c was the advice given to me) this is to ensure that you do not suffer from nuetropenic sepsis which can become a serious condition if not treated.

Sixth you should be given information about a nuetropenic diet should your neutrophils drop below an acceptable level. This is very important as it ensures you are not taking risks with food such as soft cheese, shellfish etc which could contain harmful bacteria .

Seventh report any side effects such as rashes, stomach upsets etc so your med team are aware.

You will find that a planned first infusion of Rituximab will be monitored closely. Make sure you report any side effects immediately, although most patients don’t have a problem .

Throughout your treatment make sure you work in partnership with your medical team. Contact them if you have any concerns at allno matter how silly they seem to you.

FCR is very successful and as I wrote above long time remission is common.

Here’s wishing you every success on your journey to the cocktail bar.

Keep us in touch with your progress.

Geoff

PS you will get more replies if you lock your posts so they are restricted to this forum only

Shirty78
Shirty78
in reply to Cammie

Thanks a lot Geoff for such a detailed reply really appreciate you going to the effort.

Lee

Cammie
Cammie
in reply to Shirty78

We are all in this together !

Hi, i started round 1 on the 13th june. I am 62 and did not find it as bad as i anticipated. I suppose it depends on the job that u do as to when u can return to work. Also consider yr infection risk from other people and contaminents etc.

Wishing u the best of luck on yr journey. Please keep us informed because being able to communicate with fellow cllers is really important. It makes u realise u r not in this alone and we all support each other x

Shirty78
Shirty78
in reply to lucyjack

Thanks for the advice 😊

Hello, I completed 4 rounds of FCR in March of this year. There were six planned, but the fourth put me in the hospital with dangerously low blood counts. My doctor told me this only happens once in a while. The FCR did do it's job very well. A bone marrow biopsy showed that I was in remission.

I did not work the whole time and don't really think that I could have. I was very nausious just about the whole time and once in while had vommitiing. You may be able to work though as it affects people differently. I was lucky enough to have long term disability to get me by.

Good luck with your treatments. Bring some good reading material and plenty of water. Snacks are also good to bring as you will be there for most of the day.

Thanks for the reply and advice 😊

I am on W & W but have a friend that had treatment and worked a modified schedule (took a day or two off as needed) with good results. I hope you sail through this and have the best of results.

You might consider asking your doctor to check your genetic markers before starting treatment. People who are 'mutated" do reasonably well with FCR, but those who are "unmutated" don't do as welland FCR may cause adverse mutations such as 17p. If you are unmutated, alk to your doctor about ibrutinib, a targeted therapy with inhibits an enzyme and is not chemotherapy; it is more effective than FCR for unmutated patients.

Shirty78
Shirty78
in reply to ikahan

Im mutated so hopefully should work well..

Very best wishes - I did FCR this time last year - couldn't work for first two weeks of each cycle but managed the next two - I wrote about the experience at length - you should be able to find it in previous posts. Good luck!

Thanks!

One thing I’d add is to make yourself a spreadsheet to monitor your taking the tablets over the 28 day cycle. There are several and have different combinations and different times. I think I had F, C, R and about five others. Might sound heavy handed but saves any need for remembering what you’ve taken/nit taken.

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