Just to let you all know that after my appointment in Tuesday I begin FCR on Friday....tomorrow!!
I was initially elated as previously have gone through the process to start chemo and then it's been decided to keep me on W&W . I now feel nervous and reality is hitting...did my last day at work..friends popping in with hugs and support...worried family asking if I'm ok... is this really going on?
however...my bag is packed with kindle..magazines... sweets... feels like a day trip out!
So...let's get the party started... I have had so much support. I will be relying on you all to help me get over the hangover !
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Bethan49
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Best wishes Bethan, hopefully you'll have no hangover. I went through six cycles of FCR in second half of 2012. That process went without hitch. My key observations - at the start of the first cycle there is a lot to get your head round -
1:Take a notepad and pencil.
2: Make yourself a simple spreadsheet for the pills you'll be taking at home (CR and the extras). For the first few days I was trying to remember what to take when. With my spreadsheet - became a clear as day.
I can feel the emotions you must be going through just now and so many of us share the scary anticipation of this because it's coming to a place near us very soon! Not so much a day trip as a day drip. It must feel a bit surreal to you at the moment. I can imagine how jittery your family and friends must feel too.
I can't advise on the practicalities but you've had some great advice there from Rob. I'm sure you'll have good support and I'll be thinking about you tomorrow.
Hope it's uneventful and a 'party' without a hangover.
Like for most of us it will probably be an anxious time for you but I found the chemotherapy teams very kind and supportive and I'm sure you will be re-assured and calmed by their experience and understanding. Also meeting and talking with others undergoing the same sort of treatments can be very comforting. I wish you well for the future, take care.
Rob gave you a great recommendation to take a notepad and pencil. My best friend gave me a small daily diary. I wrote down nurses names, meds, feelings, etc. I also recommend clothes with an elastic waistband. It is much easier to waltz to the ladies room with your IV pole without getting tangled up in your tubes and wires. Avoid zippers if at all possible. They were harder for me to maneuver after being loaded up on Benadryl and a few other meds. I found yoga pants, sweats or anything loose at the waist made it more comfortable for sitting long periods of time and napping. Keep us posted on your journey. Kind regards, Sally
Hi Bethan. Just adding my best wishes to the list. It must feel strange and you probably feel that you have hardly had time to get used to the whole CLL thing without starting treatment. I can't imagine how I will feel when the day arrives for me. Just sending MASSIVE well wishes to you. Try to think of it as the beginning of new and better times. Update us when you are able.
Hi Bethan, it must feel so strange to be getting ready for treatment. I know that while on w&w you feel as though nothing is happening and while that is good it makes you a feel a bit like you are in limbo.
I hope all goes well tomorrow and the good advice that you have been offered will prove useful.
Good luck with the treatment. I had FCR in 2010/11. The staff were great and I the treatment was not as bad as anticipated. Others have given good advice. If your appetite suffers I was advised to have fresh pinapple which too helped.
The worst part of treatment for me was the five minutes before they hooked me up. Make sure you say something right away if you even think you are having a reaction to the rituxan, especially, as the nurses can jump right on things to stop it or lessen the effects - mention anything! even an itchy ear! They would rather be "bothered" than end up with a sick patient. Water, water, water, and stay ahead with the nausea drugs - don't wait for nausea to hit. If your FC is pill form, Chris Dwyer has suggested opening the pills over a reasonably sized bowl to prevent them from escaping. Keep us posted.
Oh, and unplug your IV pole before dancing to the restroom! LOL! I've forgotten in the past. I have also dragged it with me when I wasn't hooked up yet.
Hi Bethan. All the very best with treatment. I'd just add - look after the bowels!! Can be a problem so eat lots of prunes and drink as much as you can!
Comfy socks and slippers plus a bottle of water were a must for me!
And if possible don't drive yourself home following treatment. Get someone to chauffer you (or accompany you if getting public transport).
Many patients are fine but none of us quite know how our bodies will react to treatment.
I tended to make my own way to hospital but arranged for my husband to collect me and drive me back home - not least because being in a ward for several hours was tiring in itself.
Dear Bethan, I remember feeling great trepidation on going to the hospital chemo suite my first day for iv Chemotherapy. but i did find that the nursing staff are brilliant kind caring and knowledgable.
I did have side effects.. quite a lot of nausea, and one fever episode of neutropenia. Now nearly 3 yrs in remission and doing well.
The water drinking is a challenge too i.e. 2 litres a day.
Something new came up recently regarding research done on doing post chemo exercise. This research was done here at Curtin Uni Perth WA.
We now have a growing number of research studies showing that if people hit a certain level of physical activity - which is relatively modest, to be honest - then they'll more than double their chances of surviving their cancer. In other words, they halve their risk of dying.
By the time you hit midlife, odds are you or someone close to you will be touched by cancer. Cancer remains a potentially lethal lottery and everyone's experience is different. But appropriate exercise under professional supervision - before, during, or after treatment - seems to substantially improve your odds.
Catalyst meets a group of cancer patients that is experiencing extraordinary benefits from prescribed targeted exercise programs.'
Hope it inspires others to excercise and perhaps do a little bit more than their comfort zone. It may be worth It and as it says "costs nothing and no side effects"
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About to start Venetoclax- what to expect.
I don't want to start treatment ever, however I know that I probably will at some point.
Any advice about starting FCR?
Would like to be boring but just starting out!
Just joined the group so here we go with my question
