Here's my experience of Day 1 of my 4th FCR Treatment. Think W&W is challenging? Let me tell you the time I spent Waiting.....

[Bribin]

Thursday - June 12, 2014. FCR No.4 -Treatment Day 1. NHS - Belfast City Hospital

10:20 Arrive on time, Greeted, Registered and issued with my personal Pager.

10:30 I’m paged – Blood Room – Height, Weight (0.3Kg Gain), Blood Pressure (marginally Low). 3x Blood samples (FBC, ONC, & Coombs), General Observations taken & recorded.

11:30 I’m paged – Registrar’s Room – Todays Blood Results third FCR Treatment completed, - ALC 0.7, PLTS 196, NEWTS 2.4, RBC 4.43, WBC 4.1. Good to go for #4. Based on your Blood John, there is every reason to believe that the masses in your abdomen are reducing. I would like to see what a CT Scan reveals before your next treatment (July 10).

15:45 I’m paged – Treatment Room

15:50 Pre-treatment – tubed-up - Saline, Pinton and more Saline by IV – 2x Paracetamol.

16:00 Tablet Induction - 9x CYCLOPHOSPHAMIDE (the C in FCR) on days 2, 3 and 4 (empty stomach, plenty of water), 7x FLUDARABINE (the F in FCR) on days 2, 3 and 4, 1x ONDANSETRON twice a day for 5 days, 1x ACICLOVIR DISPERSIBLE twice a day for 1 month, 1x CO-TRIMOXAZOLE twice daily (Mon, Wed & Fri) for 1 month.

16:10 Stats Checked - Blood Pressure (still marginally Low).

16:25 RITUXIMAB (the R in FCR) appears, ready for IV. But… when the Senior Nurse arrived to check; with the Practise Nurse, that the ‘bag’ content agrees with Doctors Prescription the paper work is astray!

16:35 Paperwork found – check completed – the Rituximab starts to flow (delivery speed restricted as normal for 1st 1/2 hour @ 100 [miles/gallon, bits/second, whatever]).

17:15 Blood Pressure taken (still on low side) decide to continue at restricted delivery.

17:40 Blood Pressure taken (some improvement) Delivery speed doubled to 200.

18:25 Rituximab completed – Saline Flush delivered

18:35 Blood Pressure taken and found to be acceptable – Pager surrendered and I am dismissed.

Waiting aside, the attention and consideration I was shown; throughout the process, was most welcome (and deserved???). To have the gift of poison; so lovingly dispensed, will be a memory I will always treasure/despise. My granny said, "The harsher the medicine, all the better for you!" Ha! She never had to take 16 pills at once; on an empty stomach, and to make matters worse ' try to avoid the tablets being in contact with your skin'.

Overall, my experience was good and tomorrow; all things being equal, I'll tell you how Day 2 has gone.

Note: At the Hospital; on the Noticeboard in the general waiting area, there was an A4 page (black & white) promoting CLLSA. Were it not that I was passing the time by studying the board, the CLLSA page would have been virtually invisible amongst the other posters.

I shall make it my business to replace it with a colourful invitation to visit the CLLSA site, complete with logo on my next visit!

John

[Musicguy]

Hi John,

I wholeheartedly agree with you, FCR is an incredible journey through trying to figure out did I take the water or did I forget the tylenol, (paracetamol), what about the anti-nausea pills, the slow running of Rituximab, the pills on the following days trying not to let them touch your skin. Your post brought it all back.

I went through it all last fall and finished in December. I am well , healthy learning to ride a longboard to work everyday, just finished the recording of a CD of my music. I went and saw my Oncologist last week and they said that they would like to use me as a poster boy for the FCR treatment. It was all worth it. But I hope not to have to go through the treatment again.

[Bribin]

Hi, Poster boy - wow! I agree with your Oncologist but just out of interest - in your picture, which one is you

john

[Calopteryx]

Hi John,

Thanks for sharing the detail of treatment with us. I'm on watch and wait but feel treatment is getting closer and am anxious about it. Part of the fear is the unknown, so it's good to have details from someone who has been through it. Hope it all goes well for you.

C

[fieldmeadow in reply to Calopteryx]

Hi Calopteryx,

You mention you are anxious as you move closer towards treatment and I know how difficult watch and wait can be - but don't waste any more time being stressed by the thought of treatment.

I recently coped with 6 rounds of FCR despite heart conditions and being in my 60s. Feel so much better already. (get full results next month)Treatment is a bit like childbirth - once you have something to show for months of sickness etc you have something amazing at the end!

[Calopteryx in reply to fieldmeadow]

Fieldmeadow,

Thanks for your positivity. It really helps when you can see that whatever is up ahead is do-able, and that others have been through and come out the other end with good results. May your improvements continue. Haemo appointment on Tuesday, lymph nodes popping and have been told wbc is up but haven't yet dared ask by how much. CT scan likely and appointments likely to be closer together now. Get the feeling that I'm becoming "interesting"!

C

[RemingtonSteele]

It's good to read this, John. My oncologist says it's time for me to start treatment. I go for a CAT scan next week and a follow up with him on Thursday to discuss it all and lay out the procedures, whatever they may be. So, it kind of gives me a little insight as to what may lay ahead.

Randal

[jangreen]

Hi I certainly found the long days while having treatment ( including travel time) really wore me out. I know some people cope better with these long days than others but for me they became almost unbearable.

[lartington]

oh dear, what a very long day. tiring and more to come. I hope the eventual outcome will improve your general quality of life. It is only when you start visiting oncology hospitals that you realise what a lot of effort goes into improving the patient's quality of life. good luck and keep smiling.

[buckinhard]

Hi John, what a very very long ordeal ! I was tired just thinking about your day. I'm most likely going to start a Phase 2 clinical trial for A6 on July. I was whining about administering 1 injection every 12 hours for 6 months. I will no longer pout about the injections !!! For me to sit for a long time, all day and take 16 pills at once is definitely beyond being more difficult than the injections !!! Wow, I really had no idea. Thank you for sharing your day, and you are in my heart and mind from now on and prayers as is everyone.

Denise