Follicular Lymphoma tips

Recent diagnosis
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Hi all, starting my treatment on Wednesday for Follicular Lymphoma. I will be having O-Chop chemo/immuno. Trying to get as organised as possible as I live at home with my elderly Dad.
Does anyone have any tips that they wish they knew before they started their treatment? Any must haves or things that made life easier?

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Firstly wishing you all the best with your treatment. I had a slightly different chemo for another type of lymphoma but a few tips from me:

  • drink lots of water the day before, day of and day after treatment to help flush the toxins out of your body
  • the antisickness pills tend to seize up your insides generally so be prepared for constipation (doctors can give stuff if required otherwise prunes etc are good!)
  • take a notebook (or iPhone) to jot down notes re the medications they give you to take home as it can be complex to remember what to take when (some hospitals provide a print out of instructions but some donā€™t)
  • wear trousers/leggings with an elastic waistband for going to the loo as you may find youā€™ve only got one hand free from being hooked up to the IV stand (it can be wheeled to the loo)
  • be prepared for a long first day (6 to 8 hours is not unusual) as the Obitinuzumab is given very slowly to see if there is any allergic reaction (some people get a reaction,some donā€™t), donā€™t worry they are prepared to deal with any reactions (antihistamines etc). Assuming no issues then they will speed up the IV on the second cycle etc
  • have a thermometer at home to check temperature once or twice a day (this would likely be the first sign of any infection requiring you get to the hospital to be checked out , the nurse will tell you what temp they get worried about , usually 38C and above)
  • buy a soft bristled toothbrush , sometimes the chemo can produce mouth ulcers/sore mouth and itā€™s much gentler than an electric toothbrush
  • do you have someone that can drive you? Some of the pre-med drugs they give you can make you feel sleepy and you may generally be tired after a long day , not a good idea to drive yourself if you can avoid it
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Thanks a mil Carole,thats great info.
Iā€™m shocking at drinking water but will defo be trying my best to get the fluids in,I got some cordial to mix in with it to help.
My sister will be with me tomorrow so she has been told sheā€™ll need to keep me entertained for the whole day :joy:. As far as I know it will be the 1st chemo and then on Thur will be the Obitinuzumab over 6hrs if everything goes to plan.
I got the soft toothbrush and the thermometer last wk just got to pick up some extra masks and sanitiser today.
Thanks again and I hope your treatment goes well :blush:

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Hi @Lea.
I can see @CaroleCW has given you great advice. I have follicular lymphoma but only received radiotherapy so canā€™t advise on your treatment.
I hope your sister has some great entertainment planned.
Please let us know how tomorrow goes. Will be thinking of you X

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Hi @Lea I expect it is an anxious time for you, I think it is the not knowing.
I am glad your sister is going with you to ā€˜entertainā€™ you.
I cannot better @CaroleCW absolutely brilliant reply, that is what our forum is all about.
Just be comfortable.
Iā€™ll be thinking of you and just let us know how you are going when you can.
Be very kind to yourself

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Wow @CaroleCW - what an amazing list of tips/advice.
This should be printed out and given to patients by the Haematology team prior to starting their treatments.
The best ā€˜take homeā€™ tip for me, and I shall certainly pass this on, is wearing trousers/leggings with an elastic waistband.
How I wish Iā€™d known this when I worked in a chemo unit. Only someone that has experienced this situation, and made a mental note ā€˜for next timeā€™, would know about this.
As the saying goes ā€œEvery day is a learning dayā€ ! Thank you so much for sharing your best peer to peer suggestions. :star_struck:

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Hello @Lea
What a brilliant question to have raised on the Forum.
There is nothing more I can add to all of the fabulous suggestions from others, I do hope you find them helpful. Over time if you have any of your own, please do share them.
I just wanted to wish you well for your treatment. Iā€™m sure you will be properly supported and looked after by the chemo staff whilst having your infusions.
Take care and keep us posted. Heidi :blush:

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@CaroleCW has given you the BEST list ever. I echo all she has said.
My daily chemo mantra was lots of water daily walks and daily yoga and it really got me through.
I was very determined to remain active and I think that really helped.
I would avoid your favourite foods keep to a very boring diet. I found it helped . That foods I ate during that time will still remind of those times and things that were once firm faves I can no longer eat - hob nobs being one of them.
Always take your medication even if you donā€™t think you need it. Donā€™t let feeling ok lull you into Iā€™m ok . Take anti sickness regularly even if you are ok its easier to prevent than cure.
I was recommended to get my wig before I lost my hair it was a great recommendation as it was an amazing match to my own hair , but I hardly wore it instead I wore hats and scarfs only wearing my wig in company.
A fluffy blanket and socks are good I am always cold.
All the very best let us know how you are doing.

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