Mum has non hodgkins lymphoma stage one in her throat, it is aggressive but cureable with chemo and radiotherapy. She has had one dose of rchop at 70% , supposed to be the first of three, but her heart rate increased and became erratic after three days. She has since been in hospital a week and they could not bring her heart rate down until yesterday when haematology finally came to see her on the respiratory ward and made changes to her medicine. We thought we were going to lose mum as she was on the upper limit of oxygen and ICU said they would not escalate if needed. Fortunately she has responded to the change of heart medicine and is now on lower oxygen. She is having bad tummy pains too and diahorrea, any advice please?
Hi Lizzyann and welcome to the Online Community but so sorry to see the issues your mum is having. I am Mike Thehighlander and am dropping in past from out Non Hodgkin's Lymphoma NHL Forum. I have lived with my type of NHL for over 19 years now and have had a type of chemo that is much the same as your mum's and it's not a suprise that she has had some issues as it can be a balancing act to get the correct level of treatment in place. Some of these side effects can happen, it was hard going for me and I was 58 at the time so I am not surprised.
You need to talk with her team as to what the plan is for going forward as R-CHOP is very effective but some steps need to be put in place so she can deal with it better.
You can go over to the NHL Forum and introduce yourself and your mum as you will pick up some great support from the folks.
Mike - living my new life and trying to make a difference
'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis
SCT NHL T Cell Community Champion
Read your message a few days ago and it was wonderful to receive support from you online so qyuickly. Many thanks for taking time to write. Sorry i didnt respond straight away. Mad few days as mum was very poorly. But she is now home with us, more stable but incredibly tired, so sleeping most of time.
Not sure what the revised plan will be yet. We are awaiting a letter for a heart scan. It is a very stressful time and this online community is fantastic as you can read and draw support at those times when there is noone else around. I hope that you are keeping well and that your NHL is under control without you having to go through gruelling treatments now.
Good morning Lizzyann, good that mum is home and stable. Being at home is a great medicine as being in hospital is very hard work and very tiring so not surprised she is sleeping. I do appreciate the ups and downs of this journey and trying to get a clear view of the road ahead is like driving in thick fog and the lights are just strong enouge, but keep her team on their toes just to make sure that her case does not hit one of the cracks in our amazing NHS.
During my R-EPOCH I did progressively sleep more but remember your mum is more than 28 years older them at the time so she is hanging in there.
I am doing very good thank you and am now over 32 months past the end of my years of treatment. It's a rather long and challenging story but you can have a look at it by hitting my forum name. I am so thankful to my various amazing medical teams and the remarkable advances to treatment, so I have a Video Conference with my team in Glasgow this morning and that should be me for a further 6 months.....you getting the smile :)
My wife and I went to see one of our four granddaughters at her nursery sports day and school gala on Friday and Saturday as well as Fathers Day yesterday and are so blessed as over four years back my team gave me a very poor prognosis but I am over 32 months past the point ai would not be arround So very blessed.
Always around to help out or just listen.
Warm and loving Highlander ((hugs)) to you both xx
ps I could not resist putting up this picture below :)
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