After Effects of Treatment

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Hi all, awhile since I've been on here. I have now finished my 6 monthly cycles of treatment for NHL Bendamustine with Rituzimab. All has gone remarkably well and consultant is very pleased with result of the end of treatment scan which shows virtually no remaining lumps. However, the drugs have impaired my liver. This was noticed after the first treatment so the Bendamustine dose was reduced from 125% to 90% and all remaining treatments were at the lower does. However despite feeling well and having no noticeable jaundice, the tests are still showing irregularities in my liver function. Has anyone else experienced this? Is it likely to clear once all the drugs are out of my system and is there anything I should or could be doing to aid liver recovery?  Apart from the chemo I was also on steroids, daily anti viral tablets and weekend antibiotics, now stopped.  I feel well in myself and slowly getting my muscle strength back, but obviously (and sadly) the celebratory glass of prosecco is off the menu! All advice welcome x

  • Hi again  and first well done in getting through your treatment.

    Unfortunately post treatment 'issues' can be normal but on the whole these all sort themselves out once the actual treatment effects have passed through your body....... This actually takes longer than you would imagine as by the end of your various treatments there is an accumulation of the strength of the drugs for the body to deal with.

    I had no Liver problems so cant talk to this but did have Kidney problems and even now - 6.5 years on from my last treatment I still can have Kidney issues if I don't drink my 2 liters of water a day - every day.

    As to what you can do to aid your Liver recovery..... this needs to be put to your clinical team.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you, I guess I was over optimistic about 'getting back to normal' too soon. I have an appt with my consultant in a few weeks, and meantime will continue to drink the as much as I can, but sadly water is one thing that is guaranteed to make me sick and always has done. I can drink fizzy drinks, fruit juices, ribena, etc., and tea and coffee although I know too much of those is not so good. At the moment I'm diluting fruit juice with water to make it more palatable. 

  • When I said water I should have said I often flavoured the water during treatment but now I just have two 1 litres water bottles in the fridge and my aim is for it to be finished by the end of the day…… I actually drink one litre first thing with my Lansoprazole an hour before I have any breakfast.

    You have to be prepared for your body to take a good few months to recover Rolling eyes

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • My problem is re-educating my body to like fluids! I was a child of the fifties, poor parents, no fridge, basically it was milk which was always off, or water which always made me gag, so I got used to drinking very little and have continued that way all my life. Actually feeling thirsty is alien to me, even with a fever I don't feel thirsty although I do force myself to drink on those occasions. Strangely until the NHL diagnosis I've hardly ever had a days illness in my life, so obviously we are all very different and my body adapted to very little fluid. I'm struggling to get 2 pints a day down, using cartons of apple juice half and half with water.... so far so good. I tried various herbal teas at start of treatment but they didn't go down well either, in fact they almost came up! I do now east lots of juicy fruit like grapes, blueberries etc., so hopefully that will help.

  • I am also a child of the fifties and remember being milk monitor and taking the small ‘warm’ bottles of milk round the classrooms Nauseated face

    You get fluid in what ever way you can…… it’s important not to get uptight about it. I always find drinking simpler during the summer months.

    I have lived with my rare skin NHL for 23 years and two day Stuck out tongue winking eye…… My Dermatologist drummed the importance of hydration from the very first day as this was one of the tools that would help my skin but also my other organs.

    He would always say that our skin was our bodies largest organ but the one we tend to unknowingly abuse most.

    During my two Stem Cell Transplants I was in my little room for about a month at a time and over this time the amazing nurse team were very strict with regards to my fluid and food intake……. with ‘Everything’ that went in and ‘came out’ of my body being monitored Rolling eyes

    If I had not reached my fluid intake by bed time I would be put on IV saline all night. Although I had got used to many many nights connected to my various IV treatments I wanted to reduce these broken sleep nights as this required regular pump checks, pump alarms going off so I would gulp down my ‘required’ top up.

    ((Hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I'm sure a lot is genetic. My dad hardly ever drunk anything and neither does my daughter! I am seriously trying to drink more, just not sure that my preferred and palatable drinks are the best... the only ones I truly enjoy are the fizzy ones, cola, fizzy lucozade etc., might also try diluting smoothies as I find them too thick to drink as they come out of the bottle .... will start keeping a diary! Thank for support.

  • I'm the same with never being thirsty so I drink because I know I should. I drink decaf tea and decaf coffee, and occasionally the zero sugar fizzy drinks when my son buys me one. I also have a pint plastic cup with a lid and a straw which I find easy to drink water from without noticing how much I'm drinking. It seems to just go down more easily with the straw. My kids call it my jamjar because of its shape.

  • We all seem to be children of the 50 I’m just about get my pension 1 week today lol but my drink is White hot chocolate , usually sticky toffee flavoured it not that good I’m sure but i between that & hot fruit teas get my 2 litres plus a day in can’t stand water it will make me gag but at night I also have cup for not spilling I use Elderflower cordial it’s bit more expensive than squash but I find it palatable but drinking is hard & at moment eating not great has to be quick easy as little smell as possible so air fryer is working it’s best , but I hope things change but I only had last chemo 30 of August 2022 so think I have way to go to get my body back I can’t walk but few steps so I usually just stay in or ride a scooter but soon I plan if consultant says ok catch bus so saving to get a new fold up wheelchair yes I planed to have a future this illness might not go away but we must control it have fun I hope but at moment just exsausted .great to visit this group & see others having to find ways & advice is great ty all .

  • Think we’re all to optimistic on normal after months of chemotherapy we are a bit poisoned need to eradicate it from our bodies as it’s internal we can not see what it’s doing that is I think part of problem understanding it’s effect on our bodies & our limitations just for a while as we recover best wishes from Wales