Good morning all, (it is 4:15 AM here in the Ozarks) I was diagnosed with CLL sometime in the Fall of 2012, and the reason I even started testing was the higher than normal levels of fatigue that I was experiencing for several years earlier. First the PCP thought it was due to low testosterone and Vit. D levels, and then thought that I was fighting a low level infection of some kind. Finally sent me to a hematologist/oncologist who confirmed that it was CLL. But was told by this particular H/O that the CLL in their estimation was not necessarily the cause of my fatigue.
Then in May of 2014 we discovered that I had a spot of squamous cell carcinoma on my upper left gum area. I was told that this was so atypical, because of my healthy lifestyle, and a nonuser of tobacco products, and regular dental cleanings and checkups. (I wondered if this might have been caused from years of stuffing roasted sunflower seeds in my upper cheek area) Anyhow I have healed wonderfully from the oral surgery and thankfully did not need to go the chemo or radiation route, as the ENT that did the surgery was able to remove the T 1 cancer.
One thing in closing, I have observed that this summer I have had a lot more fatigue, after a spell of heat exhaustion, a with cramps for 2 or 3 days, and fevers that would come and go for almost 2 weeks. After a cycle of strong antibiotics, that left me wiped out, I am feeling some better. I think that my fatigue is worse when there is a lower barometric pressure, and with higher humidities.
Also, the night sweats have been getting more frequent, as this issue progresses. My WBC was 41000, the last test.
Oh, I've been told that I still look healthy and great, as I garden, as often as I have the energy and get lots of sun, until I just can't take it any more. We live on 5 acres where we raise apx. 100 laying hens, a few sheep, 2 hogs, 2 donkeys, 1 dog, and a whole passel of cats.
I have read that because of the lowered immune efficiency I need to be cautious around livestock. Any input on this idea or concern from others or any doctors in the group.
Thank you, for reading and for the groups support.
S. Doyle
Written by
ozarkharper
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We may be neighbors! I am in NE Arkansas, not too far from the Ozarks. I have found this summer to be particularly fatiguing and I believe the heat and humidity are a big factor in that. I keep hoping cooler breezes are on the way. It sounds like a great life surrounded by your family, livestock and the wide open range!
A compromised immune system is one of the main things I have learned about CLL so you are wise to be aware. It reads as if, overall, you are in good health having bounced back from your oral surgery so well. I hope this trend continues and that we do get some respite from this heat and fatigue.
I am a 63 yo female living in the US. We are similar in that I too was diagnosed late 2012 during a work up for fatigue. I have 13q deletion, ZAP 70 and CD 38 negative. My ALC has slowly increase from 9 to 23. I am now stage II with enlarged spleen and lymph nodes. Other labs are normal. My fatigue has worsened and no other explanation for the fatigue can be found. Endocrine system checked thoroughly as well as all vitamin levels which are normal. I sleep well and don't have sleep apnea. I eat a good diet, low in carbohydrates, adequate protein and organic whole foods as much as possible. I exercise daily for a total of 30-60 minutes depending on the day.
There are so many things that can contribute to fatigue and it is important to look at not only your labs but lifestyle issues as well to make sure nothing else is causing or contributing to your fatigue. If those things have been excluded, then the CLL becomes more suspect as the etiology of your fatigue. Also in regard to infection risk, ask your doctor to check immunoglobulin levels. I found that the community oncologist I had did not check them, however the CLL specialist I now see checks them at every visit.
Last year I was diagnosed with very early breast cancer (DCIS) and elected bilateral mastectomies with immediate reconstruction. I needed no other treatment but had 3 reconstructive surgeries. I ended up on short term disability from my job, then long term disability after 3 months and now have Social Security Disability primarily from extreme fatigue and significant weight loss. I am in the process now of discussing treatment options with my specialist. I do not want anything that further increases my cancer risk so I do not want chemo or CTs. I was pleased to learn that if I am in a clinical trial I can opt for MRI's rather than CTs. The rule is if you start with CTs you have to stay with that imaging modality throughout the trial. So I would elect to have MRIs. We are looking at obinutuzumab and venetoclax. I really want to be treated as my lifestyle has been so significantly impacted.
So that is my journey. Everyone's journey is different. It is wonderful you have what sounds like a nice farm and environment to live in. Enjoy your life, do all the things you need to do to be healthy, see a CLL specialist which will relieve your mind greatly, and take one day at a time. We have every reason to be optimistic about our futures with all the new therapies that are available as well as in the pipeline.
Further to the welcome and good advice you have already received, I'd just add that when it comes to immunity, you'll need to keep an eye on your neutrophil levels as these white blood cells are your primary protection against bacteria. As MelioraDay mentioned, your specialist should check your production of immunoglobulins (antibodies) as that generally falls away over time when you have CLL. My specialist initially checked them every 18 months, increasing the testing frequency until I reached the stage when I needed monthly IVIG infusions. It's not possible to boost your neutrophils by infusions, unfortunately.
Pathogen exposure will be unavoidable on your 5 acres, but you would be wise to wear a facial/surgical mask when working in close/dusty conditions, particularly when working with livestock or in the garden and you should always wash your hands before eating, touching your eyes, nose or mouth.
You've also mentioned surgery for a squamous cell carcinoma, so you'll need to be proactive about sun protection. With CLL impacting our immune system's surveillance of incipient secondary cancers is diminished, putting us at higher risk of secondary cancers, which can be up to 10x the risk in the case of skin cancers. We also don't tend to do as well overcoming secondary cancers - again due to our lowered immune system efficiency.
There's plenty of information elsewhere regarding the above, supported by references, with this post providing an overview of how our immune system is impacted by CLL: healthunlocked.com/cllsuppo...
Fatigue is a common common complaint and irrespective of what your H/O says, if other causes have been eliminated, then CLL is likely responsible, even in the early stages of CLL or when lymphocyte counts are low: healthunlocked.com/search/f... You'll find plenty of tips for countering fatigue in those posts including low vitamin D, so it's good to see that your vitamin D level has been checked and found OK.
To end on a much more positive note, you're getting plenty of exercise and that provides so many benefits I hope you'll be able to continue in your active lifestyle for many, many years to come.
There are a number of posts here on diseases we can catch from animals however birds are a larger problem... not the birds... but their droppings.
I had a CLL friend a number of years ago who cleaned out an old shed, which had bird droppings in it... the sweepings became airborne and almost killed him... he was disgnosed with Histoplasmosis...
Birds also introduce parasites, fleas and ticks into the environment around their nesting areas. This combined with the unpleasant odours that droppings from birds create presents a risk to human health.
Bird Dropping Diseases
What is Cryptococcosis?
Cryptococcosis is a fungal disease associated with droppings and also grows in soils. It is very unlikely that healthy people will become infected even at high levels of exposure.
What is Histoplasmosis?
Histoplasmosis is a disease caused by a fungus called Histoplasma capsulatum, which grows in pigeon droppings. It also grows in soils and can be found throughout the world.
What is Psittacosis?
Psittacosis is an infection caused by Chlamydia psittaci, a type of bacteria found in the droppings of birds such as pigeons. When bird droppings dry and become airborne people may inhale them and get sick.
You need to be very cautious... fungi are very hard to treat..
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I'm new and just been diagnosed age 46
I'm new to the site, just saying hello :)
I'm new here - (UK based) carer for CLL husband who has just commenced treatment with obinutuzumab & Venetoclax - not going great 
I'm new to this game...
New Here- Bagelstreet225
