I was diagnosed with Acute myeloid leukaemia (AML) . I underwent my chemotherapy with complete remission. During chemotherapy during my neutropenia period I got E. coli infection. I have now undergone two rounds of consolidation treatment and every time I have got E. coli infections during the nadir period. I am not able to figure out how to prevent myself getting infected. I have pets at home. Can someone please advise.
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Hi Shah
My husband has Acute myeloid leukaemia (AML) and had an E Coli infection during his first or second round of chemo when he reached neutropenic status. He had to have his PICC line out as a result which is frustrating.
His consultant did tell us that the E Coli was likely already in his stomach / body and that jar isn’t necessarily a case of doing anything wrong or not being careful.
Perhaps you could ask your care team whether they have any suggestions? We did ask about whether it was worth my husband taking some form of good bacteria / probiotics between rounds but they didn’t seem to think that this was going to make much of a difference. I think your best course is asking the team whether they think the reoccurrences are unusual and if you should be doing anything differently. I’m sure they will be able to reassure you.
We do have a dog at home, and my husband tries not to have him laid on him like he would have had previously, but it is also difficult not to pet or give your pets affection. We try to keep to regular hand sanitising after.
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The doctors did change my PICC line after the second infection as they felt that could be the reason. But this time after my consolidation treatment I had E. coli infection. I don’t know what’s the reason and the doctors also don’t know exactly what is causing.
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I think the reason they take the PICC line out is because there only needs to be a tiny spec of E Coli left behind, perhaps sat on the line somewhere (or elsewhere in your body) that the antibiotics haven’t fully got rid of which can cause it to come back.
Maybe it is something as ‘simple’ as this. Let’s face it though, there is nothing simple or straight forward often times with Acute myeloid leukaemia (AML). Just when we think we have it sussed, there is something else to think about. My husband has not been able to get through any of the neutropenic periods without infections, sometimes several before counts rise. We’re just coming into his neutropenic period of time again and it’s hard mentally to accept that he may or may not get an infection and there’s not a huge amount we can do to control it.
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Has your husband finished all the 4 consolidation treatment? I have 2 more to go. What precautions did you take mainly?
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Yes we have finished the chemo treatment but he will have a stem cell transplant in around a month as well due to his age and he did initially present with the FLT3 genetic mutation although this went with targeted chemotherapy. He did also have to have Flag IDA and Flag so some very strong chemo during round 2 & 3.
He doesn’t take any vitamins but tried to be very careful with food when he’s neutropenic so no takeaways, no shellfish, blue cheese etc. He is also quite careful with things like water sources so he will quite often have bottled water during this time which is an added expense but psychologically he feels better about it.
Hand sanitising often - we have lots of bottles around the house for all of us. He doesn’t really go anywhere when neutropenic apart from our house, our parents houses and potentially outside to watch kids play sport.
Regularly changing towels, clothes, bedding, and trying to do more disinfecting of the house than normal so bathrooms, surfaces etc.
Honestly though, I think there’s some luck to this, and lots out of our control. We try not to overthink it too much and we have accepted that when he gets infections, they are usually coming from within his own body. Whilst annoying, we are really strict in the day about the temp checking every 4 hours and that helps to get quickly to the hospital if we notice the temp commencing.
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Hi @Shah I am so glad that you have posted and I certainly cannot better @Toadmum’s response.
Unfortunately during treatment and when we have compromised immune systems I have found that different infections are so easily contracted.
You mention about having pets at home and I believe it is worth just being very careful.
Pets can have great therapeutic qualities and are often an interaural part of the family.
They lead a different lifestyle and have different habits to us!!
However perhaps it is worth having minimal contact with them when your immune system is so low.
I attach some information from the Blood Cancer UK website.
Managing your risk of infection | Blood Cancer UK
@Toadmum says hand sanitizing and general sanitising is key.
Really look after yourself and please do keep posting
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When I was at the hospital for my first chemotherapy, the genetics department took my skin sample to find out whether my Acute myeloid leukaemia (AML) is genetic or somatic. It has been 2 months. I haven’t still received my results. Does it take so long? When they took the sample they said it takes around 4 weeks.
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It’s actually a very stressful situation thinking about what’s right and what’s wrong. Life isn’t the same after this. I can’t be careless like how I used to be before.
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Totally understand where you are coming from. It’s like looking on life with a different lens but I am sure you will find your new normal. Maybe we will appreciate and enjoy life even more?
We didn’t have a test to assess whether it was genetic or not I don’t think, but the consultant didn’t seem to think it was. He did get his genetic mutations back in terms of the type of Acute myeloid leukaemia (AML) part way through his first cycle so about 8 days in and then again at the end of the first cycle. Perhaps you could follow up with your team to see if they have had any results in and if they can help to clarify for you.
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@Toadmum and @Shah I think you have something there @Toadmum over time I have definitely pondered my life and what I want to do and with whom. At 70+trs old I have learnt to say ‘No’ and I appreciate and enjoy my life more. The best things in life are free like family, friends, nature, music etc
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After my third consolidation chemo I have got a painful bartholin cyst because of E.coli . Can someone suggest any natural way? It’s extremely painful. I googled and it says sitz bath helps.
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Hi @Shah personally I would tell my medical team so they know what is going on.
Also tell them that you would like a natural solution and see what they come up with.
Please do let us know how you get on.
Please really look after yourself
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