CLL Support Association
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Starting FCR on Monday

After lots of ups and downs, I am on the FLAIR trial and starting FCR on Monday. I’ve tapped into a wealth of advice here, but would welcome any pearls of wisdom anyone can offer.

I do have a question though - does the treatment get worse the longer into it you go? I was hoping to book a holiday in around seven months, but wonder if I should wait.

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Hi Mandy, I don'thave any answers for you as I haven't yet experienced FCR but I just want to send you my best wishes for a smooth and successful treatment. Hope all goes well. Please keep us updated on your FCR journey x

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For me the treatment did not get worse during the six months. Each treatment followed the same pattern. Generally below par and tired the first week. Getting brighter the second week. Back to normal the fourth week.

People do go on holiday during treatment, my consultant told me. I went on a driving/hotel holiday 3 months after FCR ended and was OK.

Travel abroad may have issues with travel insurance.

Remember the treatment can affect people different ways and after you are still taking pills and looking after your vulnerable health for 6 months.

A holiday is something to look forward to and life after FCR is all about getting back to normal.

Best wishes for a successful treatment.

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Thank you so much for your reply. It’s really helped.

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Hello Mandy. Good luck in your treatment.

I was also on the FLAIR trial and allocated to the FCR branch. I started just under a year ago. I developed some kind of upper respiratory tract infection (like a bad cold) around the fourth treatment which developed into a moderately severe pneumonia. This prevented the sixth treatment. Following on, I have slowly improved over time. The first three months were scary, because the 'flu was around and I was afraid I might catch it before my immune system was back to normal. Now, at six months I feel very very much better - back to my old self before watch and wait. I have my 6 months consultant meeting tomorrow. With regard to holidays, I have been restricting trips to within the UK. We would normally travel abroad at least once a year - and we hope to go away in the autumn this year. I would not have wanted to travel much within the three months after the last FCR treatment, because it has taken me quite a while to recover my confidence.

During the course of the treatment, there were good days and bad days. Mostly the five days of pill taking were not great! For me, a lot depended on the weather! Nice sunny days do a lot to improve mood.

John

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Thanks John and wonderful news that you feel back on form now. Pneumonia seems to happen to quite a few people and I must admit that scares me. So glad you are well now and I’m sure you’ll continue to be so. Thanks for your advice and all the best.

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You'll get plenty of support from the team looking after you - so no worries about whether or not you can get an urgent appointment if needed.

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Hi Mandy56, I hope your treatment goes well and to have something to look forward to afterwards is a great idea.

However I would add a note of caution about booking a holiday (depending on where you want to go) for immediately after your treatment. You will probably be fine but occasionally people find that they struggle with recovering their energy levels and there is the remote possibility that your counts stay low for longer than expected. Holiday insurance would probably not cover you for this outcome.

Why not plan a long weekend away in this country somewhere lovely, like Birmingham (only joking!), and see how you are on your treatment before planning anything more adventurous.

Wishing you all the best for a good remission.

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Thanks JM. Funnily enough the plan is just a long weekend in Scotland. There is a party we always go to and whereas I may not feel up to dancing the night away, a few nights in a luxury hotel will be lovely.

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That sounds perfect, I hope you have a wonderful time!

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Hope all goes well for you Mandy. Keep us informed.

Sue

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Hello Mandy.

My husband’s experience was different each cycle although he felt rougher as time went on. However it was only for about 5 days each cycle (cycles 4,5,6 were FCR lite which worked effectively and he is still in complete remission).

His advice would be to ensure the sickness is managed effectively - emend is the gold standard but expensive so push for it if ondansetron doesn’t work for you.

We had planned a week in Cornwall between cycles 2 & 3 but cycle 3 was delayed due to neutropenia. However they thought going to Cornwall was a good idea psychologically so we took the injections with us.

Whilst writing this we have struggled to remember some of the details as it was 3 years ago. We are currently in Spain where my husband is walking the Camino pilgrimage to Santiago de Compostella - something he could only dream of before he had chemo.

So hold on, get through the chemo and look forward to the future.

All the best

Beryl

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Thank you so much Beryl. Hope you have a wonderful time in Spain.

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Hi Mandy just a wee note to say I hope you’re treatment goes well. My husband starts FCR on Tuesday for the first time too it all so daunting not knowing for sure what we are heading into good luck thoughts with you n your family xx

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Thank you and all the best for you both tomorrow. I’ve just had my blood tests and i’m waiting To see the consultant and sign consent forms before starting. If well enough I’ll post tonight. The very best of luck to you both.

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Keep in touch Mandy feel free to message me x good luck x

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Hi Mandy. We all react differently to treatment., so i cannot comment. Wishing you strength going forward.

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Two of my treatments were delayed by a few weeks due to neutropenia and I had to embark on courses of GCSF injections. Consequently, my 6 cycles of FCR took 7 months. Uncomfortable enlarged lymph nodes quickly eased and I was more comfortable following the 2nd cycle. However, there was no sudden increase in energy levels and 5 years post treatment fatigue is still an issue (though I'm also 5 years older!). For your encouragement I am still in remission and have had the joy of being around to witness the arrival of two more lovely grandchildren.

You may have a clearer idea of how your treatment is likely to progress following the second cycle - and some folk do not always need the full 6 cycles anyway. All the very best.

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I started FCR I January and after two rounds was put on pause due to severe neutropenia and am unable to hardly leave the home except when I have my GCSF shots and they boost my immunity up. Please wait and see how your treatment goes we all handle this differently as each case is so unique and is a roller coaster of ups and downs ( although I hope you have smooth sailing) . Wishing you all the very best from NJ USA 🇺🇸 try to stay as positive as possible and know it’s a bump in your journey and better days ahead! Xoxo

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I really hope you feel better And stronger soon. Thank you so much for taking the time to respond and i’m Grateful for your advice. Good luck.

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Hi Mandy,

I have just finished six months of FCR on the Flair Trial at Christie in Manchester. No real problems apart from feeling rough after the first two rounds, but only for 2-3 days, usually the 3rd/4/5 days after treatment.

I had my anti-emetic changed to ondanestron after the 2nd and this cured the problem. No it doesn’t get worse as you go through, in my case I have only felt a bit weary. If you are just starting the six months FCR, I think you will be advised to wait a few months after treatment before a holiday if you are going abroad. Your immune syst is compromised for several months afterwards, but your doc should advise.

I am taking antibiotics and anti-viral tablets for the next 3 months, but have booked a hol in Menorca in September, fingers crossed ! All the best, stay positive and don’t worry, FCR is the gold standard.

Anthonymac

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Thank you so much for your reply Anthony. Glad it’s behind you and you have Menorca to look forward to.

We’re only planning on a weekend in Scotland in November, but will see how it goes.

In some ways I wish I’d thought of the Christie, it’s much nearer home for me (Lancashire), but I am getting excellent treatment at the Royal Marsden.

Good health to you and happy holiday

Mandy

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