Gardening with Neutropenia??: Can someone with... - CLL Support

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Gardening with Neutropenia??

kathymac52 profile image
43 Replies

Can someone with Neutropenia ( .8) currently, work in the garden? My husband with CLL has had neutropenia for almost 4 months....lowest was .2. He just started Imbrutinib 14 days ago, and I am just worried about bacteria, etc. (Breathing in pollen and spores? ) He said he would wear gloves and a mask?

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kathymac52 profile image
kathymac52
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43 Replies
Kwenda profile image
Kwenda

Firstly I should say that I am NOT a doctor, just a patient with CLL who has been watching and waiting for 12 years.

The danger with gardening is most certainly the spores from decaying plant material.

The most dangerous of these being the Aspergillus fungus, which can cause severe pneumonia.

The late Freidrich Staib who was an internationally renown researcher in Germany of molds and fungal infections, wrote various papers concerning Aspergillus fungal infections as it is known that these infections in the lungs can badly affect those with a compromised immune system, such as those of us with CLL.

One of the top places for research papers into Aspergillus fungus is the UK Aspergillus charitable organisation which you can find at the following web address.

aspergillus.org.uk/index.html

There is also a blog at :-

aspergillusblog.blogspot.co...

There is a patient’s website where people who have had major fungal infections can exchange real life experiences to guide other patients. This web page is at :-

patientswithaspergillosis.w...

The massive PubMed resource pages on the web have many links to fungal research and I provide a link below to one research paper and some others.

ncbi.nlm.nih.gov/pubmed?ter...]

Research has proven that the Aspergillus fungus does exist in potted plants throughout the world. It is a naturally occurring fungus and if provided with a warm wet location will quickly grow. Most commonly this is a garden compost area, or piles of dead leaves in the fall. The dangerous time for this fungus to spread is when the compost or potting soil becomes dry. Then the tiny spores will form and blow around in the slightest of breezes. If inhaled into the lungs these fungal spores again find a warm moist environment in which to grow.

If your immune system is working correctly the body will soon kill and remove any growing spores. But those with CLL have, by definition, a compromised immune system and then the body is unable to fight off the growing fungal spores in the lungs.

It is significant that in most major hospitals around the world that potted plants have been removed from areas where an immunocompromised patient could be located.

Interesting also that in 2013 in England some local government workers became infected with the aspergillus fungus while collecting discarded public green garden waste materials.

I doubt that any of the regularly sold masks will effectively block the minute spores from entering the lungs.

Only perhaps masks used by biological researchers or firemen trained into chemical/biological spill work.

Dick

Ohannie236 profile image
Ohannie236 in reply to Kwenda

Thanks for this, Kwenda. I'm about to start treatment and my oncologist strongly suggested I skip all gardening this season. I've been a bit downhearted about that, but your post reminds me that there are good reasons for caution.

kathymac52 profile image
kathymac52 in reply to Ohannie236

My husband is going to be pissed he cannot do anything....sigh....

kathymac52 profile image
kathymac52 in reply to Kwenda

Thank you Dick....My husband is depressed and down about this.....feels like a loser, because he can't help....sigh....was looking forward to Spring, but not so much right now....

kathymac52 profile image
kathymac52 in reply to Kwenda

Thanks, some of your websites no longer are there....

kathymac52 profile image
kathymac52 in reply to Kwenda

how lucky for you to watch and wait for 12 years....my husband had 2 years....

Eric_68 profile image
Eric_68 in reply to kathymac52

Yep, that 12 year watch and wait jumped out at me also. Well done :)

Cllcanada profile image
CllcanadaTop Poster CURE Hero

I currently have the soil borne fungi, aspergillus in my lungs and sinuses and ears... I got aspergillosis from just breathing.. with zero neutrophils.

I was told today it likely can't be cured... It has been 5 months

Good websites

aspergillus.org.uk/

en.m.wikipedia.org/wiki/Asp...

~Chris

Lola69 profile image
Lola69 in reply to Cllcanada

Hi Chris!! U have no idea how much reading this saddens me!!

gardening-girl profile image
gardening-girl in reply to Cllcanada

Chris, I was catching up on reading this evening and came across a recent paper on a cell receptor called MelLec which is found on myeloid cells and which triggers anti-Aspergillus immunity.

Here's a link to a News & Views discussion of the recent Nature paper. nature.com/articles/d41586-...

Let's hope that your myeloid cells are expressing a robust version of MelLec and that they eventually control your infection or at least limit it from further spread!

MilliePerth profile image
MilliePerth in reply to Cllcanada

So sorry to hear this Chris - just what nobody needs. Am I reading you correctly? There was no gardening involved? Just breathing?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to MilliePerth

we breath in about 800 aspergillus spores each day.. our neutrophils keep them from taking root...

No gardening in my case when I contracted Aspergillosis, but yesterday I planted 10 pots of seeds, for my balcony wildflower garden...

Life to me is all about doing what you enjoy and damn the torpedoes... 😜

~Chris

MilliePerth profile image
MilliePerth in reply to Cllcanada

So true Chris - I like your thinking

MilliePerth profile image
MilliePerth in reply to Cllcanada

I am just wondering if CLL patients who are neutropenic should be given an anti-fungal prophylaxis - such as Posaconazole? Would be interested to know your thoughts. Take care

Teresa252 profile image
Teresa252 in reply to MilliePerth

Ooh that fills me with dread 😂 I was prescribed Posaconazole when I was having FCR and it almost killed me, I was so ill. Just reading the name gave me shivers 😝

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Teresa252

Posa-cosy has been great for me.. it was the voriconazole

en.m.wikipedia.org/wiki/Vor...

that was my nemesis.. 🙃

Your issue may have been using it with FCR...

~chris

Teresa252 profile image
Teresa252 in reply to Cllcanada

Maybe so, but I certainly don’t ever want to try it again 😂

Funny how some drugs suit some people and others don’t..

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Teresa252

Yup.. Imbruvica (ibrutinib) caused daily bleeds and ramped A.fib for me... Zydelig (idelalisib) seriously effected my friends spleen requiring a splenectomy, but it was fine for me...

Horses for courses... 🙂

~chris

MilliePerth profile image
MilliePerth in reply to Teresa252

Oh dear - there seems to be a flip side to all medications!

Farrpottery profile image
Farrpottery in reply to Cllcanada

Upon my husband’s initial CLL diagnosis, his CTScan picked up Histoplasmosis in his lungs. He’s been treated with Sporonox for five years now. He’s also supported with monthly infusions of IVIG. These treatments continued throughout a BR chemo, then 3 years later failed FCR and now with a reduced dose Ibrutinib.

He is doing quite well at the moment and we take it one day at a time.

Antifungals must be taken in morning and Ibrutinib in the evening.

Blessings on you to find a successful treatment.

Farrpottery

Ohannie236 profile image
Ohannie236

Chris, so sorry to hear this. Prayers for you that they will come up with something to help. Thanks for all your knowledge and helpfulness. You are such a source of strength and hope for all here!

Name-1 profile image
Name-1

I beleive .I want will be all right,Chris.

opal11uk profile image
opal11uk

My recently diagnosed husband is a gardener pure and simple, its his life and at 78 years of age it is his passion. We recently had the garden landscaped with all surfaces flat and accessible for our old age and with raised beds so, as he really has no interest in his condition, should I really tell him that gardening is now to be out of bounds, I don't think so because quite honestly he would have nothing left.

MilliePerth profile image
MilliePerth in reply to opal11uk

I hear what you are saying. It's such a balancing act to live your life but to also to take reasonable precautions.

opal11uk profile image
opal11uk in reply to MilliePerth

I totally agree but life, what we have left of it in our 70's, has to be enjoyed for as long as we can and for my husband life would mean nothing without his daily potter and tending his plants and garden in general, I just cant bear to take that away from him he feels most alive when he is out there, and the time will come soon enough when he is can't do the things he does now soooooooo what do you do? I have loved and cared for him for 57 years and can't bear the thought of being without him but above all I want him to be happy, am I being selfish?

MilliePerth profile image
MilliePerth in reply to opal11uk

I think you have the balance just right. You are making informed choices. Life is a risk. I have now discussed this issue with my husband. I suggested that he wears gloves and a mask when gardening - hopefully that's enough. How wonderful that you have shared all those years together.

Oleboyredw-uk profile image
Oleboyredw-uk

Hi Opal11uk,

Caution is required, but specifically if he has been diagnosed with neutropenia (low neutrophils) and if he is being treated as it is likely to weaken his immune system.

If he is in w&w then it is in general not so bed. Just be cautious, wear glove and avoid the compost heap has been my approach over the last five years.

Others can add a more scientific view.

best, rob

opal11uk profile image
opal11uk in reply to Oleboyredw-uk

Rob thank you so very much for your reply, yes he is on W&W and thankfully we don't have a compost heap because he doesn't have. anywhere to put one lol and he hasn't been diagnosed with Neutropenia nor is he being treated. I got very upset reading about it because his garden is his life and without that he would lose the quality he has now and I would hate to see that so thank you again for your reassurances and I will make sure he wears gloves.

Oleboyredw-uk profile image
Oleboyredw-uk in reply to opal11uk

Nothing is certain in life. The important thing to understand is we have an increased risk of problems. That increased risk escalates as your neuts drop. So, be careful is the important message.

We have five compost bins, much as I feel guilty I leave compost moving to my wife. I decided it is a risk too far for me, she understands. Anyway she’s the brains behind our garden.

My approach, just be careful, think about the risks and then decide if he can do it or if it is a risk too far. And ask you Dr. if in doubt.

best, rob

opal11uk profile image
opal11uk in reply to Oleboyredw-uk

Thank you Rob will do

kathymac52 profile image
kathymac52 in reply to opal11uk

If he doesn't have neutropenia, he probably is handling all the soil bourne fungus just fine.....my husband has been neutropenic for 4 months now. Luckily he is more a golfer than a gardener, and I wouldn't take that away from him either...

Eric70 profile image
Eric70

I love gardening and have not stopped even when Neutropenia. I personally believe, firstly, that it is good to be outdoors in the fresh air. Secondly, I find it important to be doing something constructive rather than sitting in an armchair waiting for something to happen. Thirdly, the exercise in CLL is important as it helps to combat fatigue. I take reasonable precautions, I wear two pairs of gloves, face mask when necessary and try to avoid scratches from rose thorns etc.. When this happens I treat them immediately. Of course the usual hygiene precautions are taken and I do scrub my hands when I have finished. So far I have survived and feel if nothing else then it is extremely good for my mental state.

Sucee profile image
Sucee in reply to Eric70

I'm the same, Eric70. And I would encourage anyone who has a love of gardening to continue, with precautions. Life is too short as it is :-)

Eric70 profile image
Eric70 in reply to Sucee

So true.

virdieblue profile image
virdieblue

I am prone to skin infections and both my primary and dermatologist have recommended a bleach rinse. Maybe a weak solution for exposed skin? Doesn't help with the inhalation problem though-

Virginia

ladyprescott profile image
ladyprescott

I have been planting flowers all week. It's what I do every Spring. My neuts are normal I believe. I love that I have color in my front and back yards. Hoping I don't have to stop. That would depress me even further.

Eric_68 profile image
Eric_68 in reply to ladyprescott

hi ladyprescott

so if Neuts stay in normal range we don't risk getting any problem from Gardening.

I'm also a Veggie gardener, Love my tomatoes and herbs. But was wandering if I can continue doing this in the coming years.

What indicator would I watch out for?

ladyprescott profile image
ladyprescott in reply to Eric_68

That would be a question for AussieNeil or CLLcanada. They would most likely have an answer. I love my flowers to and don't want to give up having pretty to look at.

Sucee profile image
Sucee in reply to Eric_68

I've been neutropenic for months now. It's not stopped me gardening...with gloves on, of course! x

ladyprescott profile image
ladyprescott in reply to Sucee

My neuts are still in the normal range even though I'm on Imbruvica. I want my flowers. Like I said, it's what I do every spring to look at the color and know the accomplishment I made. I love flowers.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Eric_68

If you have decent neutrophil levels and OK immunoglobulins, like IgG, then wearing gloves and perhaps a masks might be a good idea... probably not a great idea to sweep out a green house, cutting grass, raking or using a leaf blower.. assign those tasks to someone else when you are absent...

A bit of common sense and precaution you should be fine...

During treatment.. that’s another matter...

~chris

kathymac52 profile image
kathymac52 in reply to Cllcanada

My husband does NOT have decent neutrophil levels, that is why I asked....and I am arranging for a lawn service to cut our lawn this summer....and am taking away my husband's leaf blower....he is doing Imbrutinib and I will be doing the raking....not worth it to tempt fate.....he has not had a severe infection nor has he has been in the hospitalized......at .8 ( which is a bit better) he is still at risk....and I have been watching a dry, cough that he claims is just sinus draining....sigh....I never wanted to take this lovely gardening from anyone....but don't want to pretend that it could not end up in a lung issue....

Eric70 profile image
Eric70 in reply to Eric_68

Personally I would keep on gardening no matter what. Last year I had 6 months of Chemo and had a bad time of it. Yet I still managed to keep my garden in shape and believe it helped me mentally. So keep gardening and those home grown veges will do you the power of good.

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