Hi everyone,

[Whitehouse_77]

My name is Sarah my lovely 61 year old dad is going for his first FCR treatment for CLL on Monday am. I thought I'd write to see if any one had any recommendations on someone receiving their first FCR treatment - and although it's highly individual anything we should expect. I have prepared a chemo comfort kit for dad and mom to take to the hospital Monday as I am stuck working but will join them later that day.

[PlanetaryKim]

My first (and so far only) chemo infusion lasted 4.5 hours and was a rituximab infusion (since my fludarabine was given by pill and I didn't have the "C" part of FCR). It is common with chemo infusions to be given premeds in the form of Benadryl (50 mg) and Tylenol (650-1000 mg) in case a person has a reaction involving fever and/or swelling. I was told that happens to less than 5% of people, but everyone gets the premeds on the first infusion because you never know. Anyway, the Benadryl might make your dad very sleepy, in which case he can just nap through it. I wasn't sleepy, so I did sudoku, read a book, and ate the apples, bananas, corn chips and fig bars I brought. Drank green tea & water. Would have liked coffee but couldn't find anyone to bring me any. I could get up and go into bathroom at any time so long as I dragged my IV pole with me. It was basically a non-event for me in terms of any kind of reaction, and I could have walked or driven afterwards (although I had pre-arranged a friend pick me up). The chemo infusion room I was in had 4 lazyboy recliners, with other patients occupying the other 3. Pleasant conversations ensued.

Good luck!

kim

[Whitehouse_77 in reply to PlanetaryKim]

Thank you so much Kim That was so very helpful. Best of luck on your journey💗

[Basak]

Hi Sarah,

You are just like me 2 months ago.

My dad had the fist chemo 2 months ago.

First cycle was okey no problem. After the second cycle there was a rash but not so bad.

Besides the side effects, 'Is chemo effective?' questioning is stressful...

My recommendation is could only be for you🤗 always think positive and spend valuable time with your dad. Rest would be done by nurses and doctors.

Regards

[Fran57]

Hi Sarah. Are you in the U.K?

My husband, Paul, had FCR just over 2 years ago. As you said, everyone is different, but it was fine. The staff look after you, especially on the first session, it's just a bit lengthy for the first one, because they control everything so it happens slowly just in case there is a reaction- we were told to expect a shivery, flu like thing, which is very common, but he was fine, so each session was shorter after that. We were fed, although we took our own food and it was all ok. Paul was fine for 2 days and thought it was all okay but then he had about 4 days of nausea and a bit of sickness- I'll be honest, that was pretty horrible for him, so definitely take them up on any anti sickness medication, drink lots - but they'll tell you all this!

It was pretty much the same each month, but in between was fine.

The most uncomfortable thing for Paul throughout was dreadfully itchy skin! But not for everyone!

I would say the best thing I did was to make a chart for the medication he had to take during the 6 months- it sounds a bit silly but it was SO helpful. We noted what he took and when, along with any symptoms, temperatures etc.- we had to go back to the hospital a few times for minor things and they thought my chart was brilliant!!

Read all the information, call the helpline with any questions or concerns- they were brilliant- and I'm sure you're dad will do well with your support.

Good luck. Use this amazing site.

Thinking of you, Fran 😉

[Whitehouse_77 in reply to Fran57]

Thank you so much that's wonderful feedback! We are writing from Ontario Canada

[Cllcanada Top Poster CURE Hero in reply to Whitehouse_77]

Its very important that your Dad communicate with the oncology staff, AT THE FIRST SIGNS of feeling strange...

Treatment by infusion is not a situation to wait and see if a strange feeling passes... best to speak up immediately, so the staff can react and adjust treatment as required.

Important to remember the staff has seen it all, so they are your best allies...

Ontario has an excellent FCR protocol. Your Dad should be monitored a bit after the first infusion of Rituxan... I had rigors 10 hours later, and called the 24 hour oncology number... be certain you carry that number with you.

Read the information you are given, so you recognise side effects and call if ANYTHING is unusual...

All the best, the anticipation is worse than the treatment...and after the first round you will be old hands at it....

~chris

[Whitehouse_77 in reply to Cllcanada]

Thank you Chris👍

[Hidden]

Hi Sarah, I've had the FCR treatment. Normally it is a 3 day series every 4 weeks. But for me the first series was 4 days. That's because they wanted a separate day for the Rituxan so it could be given very slowly the first time. So day one took probably 5 or 6 hours just for that one medicine. It is standard procedure for my doctor to do this because a certain percentage of the patients get an allergic reaction to Rituxan. Not sure if all doctors do that. Prior to giving me the Rituxan they gave me a large dose of Benedryl and Tylenol to help prevent an allergic reaction. They also gave me a steroid and one other med (can't remember what it was) before all of my infusions. The next 3 days they gave me the F and C infusions which only took 2 or 3 hours.

Hopefully your father had a port put in. Its much safer and easier than trying to find a vein each time. I found that getting the actual infusions was pretty easy. The only problem I had was that I got a little twitchy from the high dose of Benedryl. But the nurse can adjust that next time if needed. Definitely take something to do. I had my ipad and other things to read. He will be able to get up and walk around with his IV pole. But on the day he gets the Benedryl (if he does) he will be very tired for a little while. They will likely have various snacks and drinks for him and your mother.

4 weeks later for my second round they gave me the Rituxan on my first day along with the F and C. Took about 3 - 4 hours. The next 2 days they gave me the F and C. So from here on out it was 3 days of chemo every 4 weeks.

Hopefully they have already prescribed meds for nausea for your father to take as needed at home. I had 2 meds that I could rotate. Some people don't have much of a problem with nausea. I did starting about the third day of chemo and lasting 3-4 days. Make sure he takes his meds at the first sign of nausea cause it really makes a difference. The pre-meds they give him prior to starting the infusions will help with the nausea too. Also be sure he drinks at least 8 glasses of water a day. It can be tough to do if nauseous, but it really helps. Also lots of protein and calories are recommended.

Hope this helps. Feel free to ask if you have more questions.

Vivien

[Whitehouse_77 in reply to Hidden]

Thank you Vivien that was so very helpful! I hope you are doing well and your journey is going as smoothly as possible. I really appreciate you taking the time to write this all makes me feel better💗

[Hidden in reply to Whitehouse_77]

You're welcome Sarah. I hope all goes well for your father. Seems like you are a wonderful daughter. He is blessed and must be very proud of you.

[MattGGibson]

Hi Sarah - good luck to your dad - you can read my experience of FCR this summer here: healthunlocked.com/cllsuppo...

Hope it is of some use.

All the best

Matt

[Whitehouse_77]

Thank you Matt!!!! That was so very helpful and very much appreciated!!!!!💗

[MsLockYourPosts Passed Volunteer]

Sarah - Tell your mother to take things of her own to stay busy. Your father may be very drowsy and just want to sleep after getting the Benedryl, especially. If he knows that your mother has things to occupy her time he won't feel that he has to stay awake and engaged with her the whole time.