My name is Dave, I am 56 next month and live in Manchester.
In mid November 2012 I was diagnosed with CLL.
So after a few months of watch and wait I finally started chemotherapy (FCR) on 10th April at Wythenshaw Hospital under Dr Nataragan in the Haematology unit.
The first thing I have to say is that the doctor and staff could not be nicer and more understanding, nothing is to much for them and will answer any questions I put to them.
Arrived at the unit to start treatment around 9am and after talking to the doctor finally started around 11am. The first part was a slow drip of anti viral which I have to say was the worst part of the hole experience, combined with this was two doses of anti histamine to combat any side effects and finally a dose of Rituximab and saline flush.
I did suffer what I can best describe as prickly heat and facial redness and bloating. The redness went within a couple of hours the bloating about 24 hours.
Finally got home around 7:15pm tired from a long stressful day.
Day 2 of treatment ( Fludarabine) arrived around 8:30am and was back home around 11:30am.
Day 3 (Cyclophosphamide) again arrived around 8:30am and was back home around 12:00.
For 2 or 3 days after the final treatment I felt very tired and kind of strange, all most like the worst hangover ever. Its now 7 days since the first treatment and while touching wood I have to say I feel fine with no side affects other than tiredness which I had become accustomed to before the start of the chemotherapy.
The only tips I would give any one about to start treatment would be, drink plenty of water ( day one I drank 3 litres and approx 11/2 litres on the other 2 days.
And most of all have a positive mental approach.
More to follow on a weekly basis.
P.S. 1 down 5 to go
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davey57
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Davey, thank you so much for detailing your experience, it's so useful for us pre-treatment people (though hoping it will be a very long time before I need it!). It's helpful to know what to expect and the hints on how to deal with things.
You seem to be weathering it well though it's clearly an unpleasant process generally. It's good that you have such a great medical team who you feel confident about.
Wishing you well for the remaining sessions and more importantly, a brilliantly successful outcome!
Please keep us up to date with your progress if you feel up to it.
First and foremost i wish you well with your treatment.
I was diagnosed in June 12 and startred my FCR in July, i was treated at Christie and was 56 when that happened, so we are quite 'close'. Although from reading your post your regime looks slightly different to mine.
Keep us posted and ask any questions you have here you are among like minds and all learning and helping each other.
I'd like to say much the same as Newdawn, Rob and Clarke - thank you for telling us about your treatment and reactions. It's helpful to hear the down-to-earth human side of what FCR is like. And I join them in wishing you well with your treatment.
Thank you very much for sharing this. It was very encouraging.
Could you please tell us what was the trigger that made the doctor decide you needed treatment? At what point does it become necessary. (I would like to hear other people's responses too!)
The trigger for my start of treatment was a joint decision between myself and my doctor. I have been a very active person all my life and was starting to struggle with the lack of energy and not being able to do the things I wanted to do. My blood counts had been border line for starting treatment for 2 or 3 months, after speaking to my doctor about this we agreed the time had come to start. I have to say in all honesty I wish i had started 3 months ago rather than the watch and wait regime the doctor had suggested. Its well over a week since the first treatment and feel really well and am able to do a little more than before treatment.
I also feel lethargic and definitely nowhere near able to do what I could do once. I used to walk a certain route every evening, for the exercise, now I do half of it and my insides feel like there is jelly flowing in it!
But my counts are marginal and it's always "come back in 3 months unless something drastic happens." On the other hand I have always been the type to
put things off unless I can procrastinate. Especially the unpleasant. I will think about you, and... well... consider what to do.
I am 58 and live in the states and was diagnosed in April of last year and started FCR treatment in June due to bulky nodes. I did have similar side effects with my first treatment but nothing after that. I had no issues during the week I received my treatments - the following week I was tired. Weeks 2-3 I worked part-time with no issues. I was told as well to drink 2 liters of water each day during my treatment days. I completed my 6th treatment in November, had a bone marrow biopsy in January and received the wonderful news I am in complete remission. I have been experiencing low blood levels over the past few months due to the Fludarabine, but am on the mend.
Hi like the others good luck and hope you get as much support as I did because I could not have gotten through it without the love and support of my husband.
I am grateful to you for sharing your experience of 1st line treatment here too and also wondered what were the signs for treatment, so soon after dx. If you felt inclined (or well enough) to share this, I would be very interested but only if you feel able.
Wishing you all the best for the remainder of this cycle.
The trigger for my start of treatment was a joint decision between myself and my doctor. I have been a very active person all my life and was starting to struggle with the lack of energy and not being able to do the things I wanted to do. My blood counts had been border line for starting treatment for 2 or 3 months, after speaking to my doctor about this we agreed the time had come to start. I have to say in all honesty I wish i had started 3 months ago rather than the watch and wait regime the doctor had suggested. Its well over a week since the first treatment and feel really well and am able to do a little more than before treatment.
Had a follow up appointment on Friday 19th and was stunned at how quick the treatment starts to work.
My WBC had been around 102 for the last 3 months and after just one treatment had dropped to 1.2.
My first cycle was intravenous which meant 3 visits to hospital, recent work by The Christie Cancer clinic has found the tablet form is equally as successful so will I will be going onto tablet chemo on my next cycle in 3 weeks.
Still feeling ok with no side effects and seem to have a little more get up and go.
Thank you Davey for taking the time and using your valuable energy to answer my question about what triggered the start of your treatment - very interesting and giving us an update on your progress.
I am really pleased to hear that you are already feeling some benefit, with no side effects. Long may this trend continue.
I am sure we would be interested in hearing more about your progress, as time goes on (I know I would be) but only if you feel up to it.
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