AML REMISSION AND COVID 19

Hi Nick Fulhamboy good to hear you wife is doing good.

The virus situation is and will continue to be a challenge for some time to come.

She is in the Government’s “High Risk” so great care needs to be taken.

i am now over 4 1/2 years post my second Allo Stem Cell Transplant and in remission and even a few weeks back my Late Effects Nurse said   “……you need to think that you have just come through your Allo SCT again and take exactly the same precautions as you did then........”   so I am basically back into a three+ months isolation controlling everyone I come in contract with and where and what I do.

She also said ”……. once a blood cancer patient always a blood cancer patient"......... "All the treatment you have had has indeed had a long lasting effect on the effectiveness of your immune system even although your bloods are ok with a few at the lower limit range of acceptable, like any virus you are at risk but this one we don’t know how a post Allo SCT Patient will react - let’s be safe and not sorry”

She did say get some fresh air so we only go out in clear days and walk in the forest behind our house. We will take the car to the beach and walk, take a flask etc but are very careful to keep a clear distance away from people and try and stay away from people who are smoking.

I never go in to any buildings where there are people...... we are not even meeting with our family including granddaughters at the moment - stay safe.

Hi Mike

Thanks for your comments, much appreciated.

I can fully understand the knock to the immune system following treatment, especially after 4 bouts of chemo over 7 months. Although luckily my wife did not need a SCT the effect on the blood and neutrophils was intense.

Always best to stay on the side of caution.

Stay well.

Hi, 

my name is Rachel and I am 31 years old, I was diagnosed with AML Luekemia only 2 months after turning 30. I rushed to a&e with severe tummy pains left side, had the pains for about a week and was loosing weight and felt very weak and tierd, but I just put it down to being a full time parent to my 4 year old daughter, turned out I never came out of a&e that day and was told the news that it was a type of blood cancer, next day May 19th 2019 I had chemo chat & my first bone marrow biopsy which my husband was with me for, and next day started intense chemo and my chemo lasted 4 months and I had to stay in hospital for all that time in a private room because I became very ill from the chemo and neutripenic (having low red and white blood count) and had nurses wash and feed me, food tubes and I ended up in intensive care which I recovered from.

I was very luckily I went into remission after the first cycle of treatment  even though I had horrible side effects from the chemo I still figured my way to the end, and lost my hair, my dignity and confidence but I still carried on to stay strong for my daughter, husband and family, friends. I came out of hospital on 23rd september 2019 with high blood count results 

but since I’ve been in remission I have picked up all sorts of bugs and chest infection and shingles, I did also recIeve a letter from the NHS stating to stay home for 12 weeks, especially as recently my blood count hasn’t been going up as it should be now and Before covid-19 existed I had a third bone marrow biopsy to check all was okay as heamotology team thought I was relapsing since my birthday 3rd March 2020 when I cane into hospital with unexplained bruising. Turned out I’m anaemic again. So they are keeping a close eye on me weekly for blood test, I’m having the blood test from my car, safe me going in to the hospital. 

advice for your wife 

after being in remission still stay careful through this covid-19 virus as people who have had AML can still be at high risk because our bodies won’t be able to fight the virus. Keep topped up on supplements and lots of fruit and vegetables, stay active and rest is key! 

from Rachel hope the information was helpful 

Hi Rachel and welcome to this corner of the Community.

Although I have a different type of blood cancer but the aim is always to find remission and I am so pleased that you have and long may this continue.

To get the best from the Community you should 'join' the AML group and also indicate how you want to receive email notifications when things are posted on the group or when someone replies to a post you put up.

When you feel up to it, it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself and if you're not sure what to write you can take a look at mine by clicking on my username... but my journey was rather complicated.

All the very best.