Hello. I know everyone is different - that seems to be the key phrase in being treated for CLL ☺️ - but can anyone say what their experiences of 2nd, 3rd rounds etc. of FCR were like, compared to their first,please?
My husband had no reactions to the Rituximab infusion in hospital, was very nauseous and a bit sick for a few days from about day 5, and has had severe, painful conjunctivitis and incredibly itchy spots covering his body (seems to be a reaction to one/some of the drugs). (Thanks so much to those of you who had helpful suggestions for this)
We're seeing the consultant this week to see how the blood test looks and to start round 2. Should we expect the same side effects, worse/ better, different ones....?
I can't imagine him having the same ones, doubled up, or coping with different ones on top 😕
Naively, I thought he'd feel better as he got towards the end of the first round...
He's also lost a lot of weight.....just because he was sick at the beginning, or to be expected? He's eating well now.
Thanks so much for reading!😉
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Fran57
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My experience is you have to keep expecting new challenges, so please keep asking the questions here on HU.
We all behave slightly differently to the treatment I think.
I was very thin at the start of chemo, but with lots of help on the cooking front started to gain weight in about round 2. Glad to hear the eating is ok.
Please let us know how you get on with the consultants for the start of round 2.
In many patients side effects build up as the treatment progresses but not necessarily the same side effects.
You must inform your husbands specialist nurse as soon as you notice any side effects as they will need to know how he is reacting to treatment.
I appreciate you are seeing your consultant on Tuesday but he/she is only the team captain. You should be using your nurse and any other team member when things develop as treatment should be looked at holistically by them.
Don't leave things and don't rely on your GP.
Your specialist team at hospital should be your first point of contact when you need help or advice don't be worried about contacting them any time day or night!
You should have been given emergency and daytime numbers for them. If you haven't get them on Tuesday. Your husband should not have to suffer side effects without help and advice.
Thank you. Yes, we have a specialist nurse and my husband has been to see the oncology doctors a few times during this first round 😕
We called them when his eyes were almost closed from conjunctivitis and he saw eye department doctors, who gave him drops -they've improved, but are still sore. He went in again and saw another doctor when his skin started to react and was prescribed creams and antihistamin. So, we have sought advice, but it's just not knowing how much is normal; we expected side effects, but we didn't realise they last the whole 28 days... We would have gone back today, but he can't face going yet again, knowing we'll be there on Tuesday (as well as tomorrow for a blood test and Thursday for round two).
We've never seen a GP, only the consultant, who is really good.
I know your husband will be fed up with visiting hospital ( I was hospitalised 5 times in 4 months) but don't let him persuade you to ignore any side effects no matter how small. Just use the phone numbers you were given.
Better safe than sorry I say!
Remember as the carer you are in charge! Or at least that's what my wife informed me. Lol.
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