Live foods

Hello. My consultant could not answer this so I thought I’d ask for peoples experiences. I was diagnosed with stage 4 dlbcl in 2018. A long and arduous year of chemo failed so in November 2019 I had the new CAR-T treatment. I read somewhere that if You’ve had blood cancer then you aren’t supposed to eat live foods, like yoghurts and kefir because the immune system is weakened (especially after CAR-T). But no-one seems to really know. Has anyone here heard this?

  • Advice on whether or not to restrict diet seems to vary by location.  It's not a thing here in Australia but it seems to be common in the UK.

    I would ask your team for guidance.

  • Hi again .

    Treatments like CAR-T and for me 2 Allo SCTs……. but any cancer treatment especially chemo can open folks up to food bugs that in normal life would not be a problem as a healthy immune system just kills them off……. but during and post cancer treatments our bodies can not fight these 

    So food safety is important especially if your blood counts are at the lower acceptable level or more importantly if you are in the Neutropenia area. 

    During my main chemo and more importantly during my two SCTs I was overseen by a dietitian who guided us with regards to food safety and getting my weight back up (I lost 27kgs)….. post SCTs she would phone us once a week and eventually once my counter were ok she gave me the all clear to eat what I wanted…….. so I always went straight out and had a massive bowl of West Coast Shellfish Stuck out tongue winking eye 

    Early on in my main chemo treatment I harassed my wife that I wanted a Chinese takeaway (even although my team had told me not to have them) the following morning I was very ill.... the rest of the family were fine... I had to go see my team and after a few tests I had developed Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation.

    It turns out a high percentage of the population have HP but it’s basically dormant but a small infection can set it off

    The 3 pack antibiotics I was given for the HP were horrendous..... never did have any more takeaway during and immediately after treatments until my counts were well up.... but even now - 6+ years on we are very careful Rolling eyes

    I eat everything but but do take care especially if I am fighting an infection as my immune system will concentrate on the infection and can open the door for a food bug ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Wow that’s quite a reply! Really annoying about the Chinese Disappointed.I haven’t had any chemo since November 2019, but I still lhave a blood test around every 3 months and every time I have blood tests they always say ‘your bloods are okay’. They don’t go into any detail so I assume I’m not neutropenic. Even when I was having treatment they never mentioned anything about diet, and even when I’ve asked, specifically about Kefir, my consultant doesn’t know. I’m kind of assuming it’s okay but daren’t try. I cultured my own kefir before I was ill and drank it every day.

  • I have to be honest and say that some of my reply is a copy and paste as I have replied about this very subject a lot.

    Once you get to the point that you are told ‘your bloods are okay’ you have to assume they mean that your bloods are sitting between the accepted lower to higher limits.

    I am 6 years 8 months out from my second Allo SCT and my bloods are ‘okay’ but I do get copies of all my blood results and when I see them there are times when my important levels like Red, Lymphocytes and platelets are at or slightly below the acceptable levels. I asked about this early on and was told “Considering what your bonemarrow has been through these levels are very acceptable as they are stable across tests….. but just watch out when you are fighting an infection”

    I do tend to stick to pasteurised dairy products but don’t hold back on stuff like shellfish….. can’t live in the Scottish Highlands and not eat shellfish Stuck out tongue winking eye

    Although I still careful during infection times. I have been 7 times back in hospital (40 days/nights) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, A Fib and a heart attack so tend to give my body and immune system time to recover before eating the ‘problem’ foods.

    I don’t know about CAR-T but during my Allo SCTs all my childhood vaccinations are wiped out so I had to get them all again but I can’t have ‘live’ vaccines like the the MMR jabs as my new bonemarrow can’t deal with them and could have an effect on my remission so there is a weakness in my bone marrow hence the many infections but on the whole ai get on living life as full as possible Thumbsup

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • I know this is not exactly the answer, but I thought I'd share. When I was through R-chop I treated my self for a fish and chips from the local chippy. The next day my body felt so bad and dehydrated.

    The chippy is fine. They serve good food.

    It might have been all the fat and oils in the food which my body couldnt handle because of treatment.