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Hi everyone I was diagnosed last week and start chemotherapy on Monday. I'm really frightened about any side effects 

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

    I don’t have FL but was diagnosed in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

    What exact treatment are you having?….. side effects often depend on the treatment type.

    My initial chemo was R-EPOCH. I had 6 cycles that had me in hospital for 5 days/nights on my chemo IV 24/7 for 120hrs at a time (Extra Treatment for me) and honestly apart from some fatigue that was my main side effect, felt sick at times but never was.

    Dont be looking for side effects as often they never appear or when they do they are not as bad you think they can be.

    Happy to take you through this more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike 

    I'm having 8 cycles of chemo

    obinutinmab, cyclophospharnide, vincristine & prednisone

    I'm in so much pain to start with so don't really want any side effects I know everyone is different and I'm sure I will get something it's just a very scary journey it has happened so fast. 

  • Hi again, so you are having R-CHOP less the R part and this is a standard treatment t that is very effective with great results….. and yes every journey will be different. My treatment had a few of these drugs so I have an understanding of the journey you are on.

    Sorry to hear about the pain you are in, you will see from my profile (hit my community name) that by the time I went for my first blast of chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted and the pain was off the s ale.

    I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner….. so things can change very quickly.

    By the end of my 2nd/3rd cycle the swelling was well down. The final cycles were used to further control the condition.

    I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    Any question - happy to help ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you for talking to me Mike,I think I need to put my big girl pants on and just get on with it I have so much to fight for..

  • I would Sammy that once you have your first treatment under your belt you will get into a rhythm.

    You may find the info in this link helpful for getting through treatment lymphoma-action.org.uk/.../top-tips-you

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • O-CVP . You'll find it starts to work very quickly and the symptoms of the lymphoma should improve almost straight away. Don't be scared, you're going to get well. Try and get some exercise, try to drink a lot of water, juice, tea, whatever you fancy, and do contact the hospital if the drugs they give you for nausea don't work well. And let us know how you're doing.