SLL and gardening?

[zentangle]

I have SLL. I am treatment naive, have no B Symptoms and normal bloods. Do I need to take the same precautions regarding gardening as have been recently mentioned?

[Kwenda]

If you have been diagnosed with either SLL or CLL then almost by definition we are immunocompromised. Our immune system just does not work properly and there is nothing we can do about this. Obviously the higher up you are on the Rai stages or Binet classification the most compromised your immune system.

Thus some precautions are necessary so that our weakened immune system is not overloaded with fungal spores, bacteria or viruses that could overwhelm us. Hence when you read about gardening any precautions mentioned will obviously always err on the side of safety.

I am not a doctor, do not know your full diagnoses and cannot offer medical advice, but I can say that there are many of us out there with SLL or CLL and we still do our gardening on a regular basis.

All we do is to take sensible precautions with not breathing in the dry spores from compost, use gloves and overalls plus lots of hand washing or a good shower afterwards. Obviously if we do get a cut from a rose thorn we treat it immediately with soapy water and then an antiseptic.

In summary, no problems, but just take that little extra bit of care.

Dick

[zentangle in reply to Kwenda]

Thanks. This sounds like sensible advice. Does your regime include mowing the lawn? I have had SLL for two years prior to diagnosis and obviously took no precautions, without incident. Also, my haemotologist didn't mention it.

[Kwenda]

Sure lots of lawn mowing was done... ( though that could be different for those who suffer from hay fever)

Don't forget that exercise has been proven to be very very good for anyone with SLL or CLL..

Many on this forum have greatly benefited from exercise of all types.

Dick

[Oleboyredw-uk]

I have a very large lawn and hayfever as well as CLL, plus I'm lucky enough to have a 42" ride on cutter and a 16" mower. I continue to cut the lawn and wear a face mask, primarily as it helps significantly with the hay fever. I've moved away from using the big mower to the little one to get exercise, apart from when I cant keep up with grass growth. Then I use the big one. This was a consious decision to get extra exercise.

Does it help, I dont know. But I do feel pleased with myself after a morning of marching round the garden, which in itself is good (I think).

Rob

[AussieNeil Administrator]

There's been lots of good advice in replies to this question and the earlier one on gardening. I've been living with low and worsening immunity for over 5 years - in fact it was rapidly developing neutropenia that lead to my SLL stage IV diagnosis, which subsequently developed into CLL. I have a medium sized garden and other than when illness has prevented me from doing so, I've done the usual gardening tasks with the exception of manure application and maintaining a compost heap. I always wear a mask when handling potting mix and damp it if it is dry. (Even healthy people can get ill if they don't mask up - there's warnings on the packs.) I've never worn a mask when cutting the lawns (perhaps I should in dry, dusty conditions) or doing other gardening activities, but I do wear gloves when weeding. I don't think I've ever become ill from gardening activities, but we are all different in where our immunity is particularly weak. Fungal infections in particular can be extremely hard to overcome, even for healthy people.

Given the inevitable reduction in immunity with SLL/CLL, wearing a mask is a good practice to get into. You might feel a bit self conscious and I guess you could always pass it off to hayfever if you don't want people to know your diagnosis. (I find the most annoying thing is the way glasses fog up when you are wearing them, but you can get special masks that are supposed to reduce that annoyance.) I'd add that if after any activity, you blow your nose and your mucus isn't clear, you should have been wearing a mask.

I agree that the exercise is good and of course just working in the garden can lift your spirits.

Neil

[buckinhard]

Hi zentangle,

I still clean the horse's feet, their stalls, cat litter boxes, pick up and carry/hug the kitties and they are dirty little scamps from being in the barn area, so far I'm ok. The only one I'm hesitant to clean is the hen's coop, but do pickup and cuddle the hens which are free range on the property during the day. I keep my face and hands very clean, soap and hand sanitizer in the barn. I do lick my lips and wipe my face from dirt and sweat. I should/could/would wear a mask for certain tasks, but so far I've only worn one for the hen's coop......wear leather work gloves for most tasks, get tons of bruises and scratches, and so far, at the stage I'm at now I've been ok, don't know if I'm exhibiting risky behavior. During the upcoming treatment, I don't know what will be allowed/ not allowed which will be extremely hard for me to accept.

All the best on your journey!

Denise

[Cllcanada Top Poster CURE Hero in reply to buckinhard]

I almost lost a CLL friend from complications of histoplasmosis, you may want to be more careful... bird disease can be serious in the immunocompromised...

'The most serious risks arise from organisms that thrive in droppings, nesting materials and feathers. These include:

Bacterial: e-coli, salmonella, listeriosis, campylobacter, psittacosi

Fungal: histoplasmosis, cryptococcosis, candidiasis

Viral: meningitis, Newcastle diseasse

Parasitic/Protozoal: toxoplasmosis, trichomoniasis

Bacteria and parasites can be inhaled when disturbing nesting sites or ingested by eating contaminated food or eating with dirty hands. People with exisiting health conditions may have weakened resistance and are especially susceptible.'

dol.govt.nz/workplace/knowl...

idph.state.il.us/public/hb/...

Cats too..

vet.cornell.edu/FHC/health_...

[buckinhard in reply to Cllcanada]

YIKES ! Wanna' dozen or more gatos, I have 33 kitties, all rescue. Thank you so much for the info. I will get an isolation mask( several) from my friend who is an ICU RN. I think the importance of me changing my ways is related to the CLL. I will be more careful and diligent from this day forward and wear the masks, as soon as I get them.

Thank you Cllcanada !

[Cllcanada Top Poster CURE Hero in reply to buckinhard]

You should consider only certified particulate masks, N95 or the better N99.. they need to fit tightly and be changed every few hours. They afford some protection, but most viruses pass right through...

The only devices that protect the user are respirators with external or bottled air sources...

[buckinhard in reply to Cllcanada]

Hi Cllcanada, I ordered 2 types of masks. 3M 1860 surgical mask N95 respirator FDA( filters viruses and bacteria, used in surgery) $16.90/box of 10 and 3M 9211 Plus Aura N95 Respirator w exhalation valve $21.83 box of 10. No N99s were listed on the CDC website. The only masks that filter viruses, bacteria plus other stuff are surgical masks N95 with the FDA approval listed on the CDC website and none had exhalation valves. Thank you so much for the info and scooting me along to start using them!

Denise

[bobby48]

I am very much like you Denise, only replace animals with 3 baby grandchildren who get colds, get mucky etc but I love them beyond words and consider myself lucky to be here with them. The joy of being with them is worth any risk in my opinion. I miss my dog and cat who passed away at a great age, but i handled them both without incidence through my watch and wait on CLL and did gardening and building work around the house. Its balance as with everything and i am aware of my surroundings. I travel weekly with my wife who works in London, I stay in hotels, take the (very packed) tube trains and buses and never wear a mask. Im old school and would be too embarrassed - but i keep a handkerchief to cover my nose if anyone is looking ill and coughing too much. I hope we can all continue our lives happily and not let our misfortunes diminish our love and enjoyment of life. Im 65 out of chemo with 14 months remission and counting - life is great! good luck to us all - best wishes Bobby

[buckinhard in reply to bobby48]

Hay Bobby,

I am so very happy to hear your successful treatment !!! I agree with you on balance and quality of life. I had to give some of my horses up because I can't ride 5-6 days a week like I could just 3 or so months ago. It's a huge amt of work if one's not feeling well. I'm lucky if I get 1 day riding now and 1 day bathing everyone. I wouldn't have a good life without my animals. I choose to stay at home, when my husband wants me to go on a short trip with him, it's like pulling my teeth. When I do go I'm enjoying the time with him although happy to come home. I would not endure life wo my critters. So, I'm ready for treatment, I'm 59 and this CLL has had a real negative impact quickly on even the basic elements of my life. I'm glad to hear you travel without catching anything! I know it's very hard to lose your dear dog and cat, I can tell you loved them very much. What joy you have with your grandkids ! Keep up the good life !

Denise

[sparkio]

Hi mate,

I would not want any one to copy me, but I have to confess that I do nothing differently than I did 12 months ago, prior to diagnosis and treatment. I genuinely do feel back to normal but with the added motivation that I can now carry on with the rest of my life. I personally believe that I might get knocked over by a bus tomorrow, anything can happen, so I tend not to worry about things as much as I might have once done. For many , this is easier said than done, however when you think about it, a lot of the day to day stuff that we worry about does not genuinely warrant it. If you fancy being Percy Thrower for the day, then crack on.

By the way how, was your jaunt to the big smoke?

Regards Mark

[zentangle in reply to sparkio]

Hi Mark, The jaunt was great-it's good to get away for a few days. Les Mis was very enjoyable and I managed to park quite close. With regards to The gardening thing, the discussion was started here with it being an almost given that we wouldn't do it. I am also very interested to see if there is a difference between SLL and CLL regards immunity, but no-one seems to give an answer.

I'm really glad you feel you're back to normal. Are you going to work? I presume you had to stop during chemo?

By the way, I feel more relaxed about speaking on the 'phone now, so if you fancy a chat, I'm free Tuesday/Wednesday of next week. Let me know.

Regards,

Steve

[AussieNeil Administrator in reply to zentangle]

I'd be guided by the following with regards to SLL vs CLL and immunity.

The observational difference between the two conditions is where the cancerous lymphocytes tend to congregate in your body; SLL - mainly lymph nodes, CLL, mainly peripheral blood.

(It helps if you consider that the 'two' diseases were initially defined by the observed symptoms, before the underlying cause was discovered. The cause of both is now recognised to be clonal B-Lymphocytes that have halted at a particular stage of development, which can be recognised by the CD expression pattern. This is is assessed in a flow cytometry test to differentiate CLL/SLL from other B-Lymphocyte blood cancers. CLL and SLL are recognised as the same disease by the World Health Organisation.)

You'll get falling immunity over time with both, as the number of cancerous lymphocytes increasingly suppress T-lymphocytes and your remaining good B-Lymphocytes (the latter causing the long term drop in your immunoglobulin/antibody levels) crowd your bone marrow, suppressing the production of other white cell lines, in particular your neutrophils.

Treatment for both is the same and has the same suppressive effect on your immunity, which while worse immediately after treatment, can leave treated patients with permanently reduced immunity.

We are all different in how our condition progresses, so individuals will need to be guided by how healthy their neutrophil and immunoglobulin levels are, with the best indication being how often we get infections and how long we take to recover from them compared to healthy individuals.

Does that help?

Neil

[zentangle in reply to AussieNeil]

Thanks Neil, that's very useful. It explains the difference very clearly. Anecdotally, on here and Macmillan, a number of SLL patients report no B symptoms, but almost all CLL do. The could be because CLL patients have had undetected disease much longer, I suppose?

[AussieNeil Administrator in reply to zentangle]

Actually, the reverse is the case, with far more of those with SLL diagnosed in later stages of the disease than those with CLL. This makes sense when you consider that two thirds of this community were diagnosed incidentally from a blood test taken as part of a general 'health check' or it was discovered when they were being treated for another illness:

healthunlocked.com/cllsuppo...

If you have SLL, your peripheral blood may not show any cancerous B-lymphocytes until late in the progression of the disease, if at all. SLL patients may remain totally unaware of their condition for many many years if they only have deeply buried bulky nodes.

Here's Chaya Venkat and the late Professor Terry Hamblin discussing the differences back in 2010:

updates.clltopics.org/1993-...

With regard to the anecdotal evidence on B symptoms being less common in those with SLL, that could be due to a higher level of cytokines (immune system messaging proteins generated by B and T cells) circulating in the blood in those with CLL. We are still learning about how these affect us.

Would you mind sharing how you were diagnosed?

Neil

[zentangle in reply to AussieNeil]

Hi Neil, Not at all. In October 2012, I noticed a lump under my right armpit which only manifested itself when showering in the morning. I went to the Doctors and saw a Nurse Practitioner who said she could not feel the lump, but would send for a blood test. This she did and it came back normal. She did not think to refer it to a Doctor, so it was left until March of this year, when I went to the Doctors with a persistent cough and mentioned that the lump had not gone. He checked me over and referred me to the Haematologist. She confirmed SLL without lymph node biopsy. I was put on Watch and Wait. My next appointment is May. The lump is marginally larger and I have two pea sized nodes in the inguinal area and a five centimetre node in my abdomen. No B symptoms at any time.

Regards,

Stephen

[AussieNeil Administrator in reply to zentangle]

Your diagnosis experience was similar to mine. I had a pea sized lump appear on my upper thigh many, many years ago. When I asked my GP about it, he said it was x (I can't remember his term for it) and nothing to worry about. It was only quite some time after my SLL/CLL diagnosis, that I mentioned it to my haematologist, who told me it was a swollen lymph node. I now get asked occasionally at specialist appointments if it has changed in size - it hasn't. I now wonder if I could have been cured if the true nature of the lump had been recognised and I'd been given radiation treatment. One little known difference between SLL and CLL is that SLL can be cured with radiation if caught early before it spreads more widely.

While swollen lymph nodes tend to appear in roughly 200 standard places in the body, they can appear pretty well anywhere. GPs only tend to see about half a dozen cases of lymphoma in their career on average (with SLL/CLL only a fraction of these), so it takes a clued in GP to correctly identify a case. One of the reasons why going to a specialist is so important for us.

Neil

[zentangle in reply to AussieNeil]

Hi Neil,

A few questions if I may? How long before diagnosis do you think you had it? If you're High Risk, how come they didn't start treatment straight away? What do your nodes look like now?

Regards,

Steve

[AussieNeil Administrator in reply to zentangle]

I probably had SLL for at least 4 years and maybe up to 9 years prior to diagnosis. After my diagnosis, my doctor checked my previous blood test records and the oldest on file showed I had low neutrophils in 2006 (3 years before diagnosis), which was ignored by my doctor at the time.

With SLL, the Ann Arbor staging method is used and with CLL it is either Rai or Binet. (I'm stage IV on both SLL and CLL staging systems.) The Low / Medium / High risk staging was an attempt to replace these with a common system, but it doesn't seem to have caught on.

With CLL/SLL, studies have shown that early treatment doesn't improve survival (though that seems to be changing with FCR and hopefully with the newer treatments - it is too soon to tell). Hence Watch and Wait . For that reason, high risk patients should be seen more frequently and more closely examined (e.g. bone marrow biopsy, CT scan, prognostic tests) until the specialist gets a feel for how the disease is progressing. I was initially seen by my specialist monthly, but have progressed from monthly blood tests to blood tests every other month or more frequently if ill and I see my specialist every 3 months.

My neck nodes are slightly more swollen and can temporarily swell considerably when I have infections so they can get really uncomfortable at times, but thankfully do shrink back eventually. I don't think they are obvious to others normally. Internally, I won't know until I have another CT scan, though I gather my swollen spleen hasn't changed much.

Neil

[zentangle in reply to AussieNeil]

Thanks very much for taking the time, Neil. Sounds very like me with regards to fluctuation in nodes. My bloods are all normal at the moment. I next see the specialist two months after initial diagnosis. My node(s) - there's only one visible - seem to fill in the morning then go down by lunchtime(??). If I could as one more question: how old are you?

[sparkio]

I never had an issue pre treatment regarding immunity, and in fact never felt ill at all. However I was diagnosed and started chemo in the space of 4 weeks. Because the chemo is chemoimmunotherapy, the drugs attack the cells in your immune system and so I was told I had to stay away from crowds.

I am on light duties , doing an office job ,and can not ride the fire engines until about 3 months post treatment ,because of the immunity issues. Can talk on the phone if you want ,just let me know your number via an inbox, and I will give you mine.

Regards Mark