I was diagnosed with CLL in January 2018. It was quite shocking as no one in my immediate family is known to have cancer(s). Autoimmune issues are prevalent, but not cancer. In any case, I am in W&W with CLL. I recently had my second round of tests since diagnosis and my numbers all numbers are changed a bit. From January 2018 to present: WBC 26.5 to 30 RBC from 4.27 to 4.22 Platelets from 288 to 271 Absolute Lymphs from 21.7 to 26.1. I am a bit concerned. I will meet with Hematologist on 5/22. In the meantime, I am suffering miserably with allergies. Obviously, my Immunoglobulins are poor. IgM 20 IgA 59. Thankfully IgG is strong. What is everyone doing about severe allergies? Any thoughts, besides living in a bubble until winter?
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MP2018
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I was diagnosed a bit more than a year ago. Shortly after I began having real sneezing fits throughout the day. It passed mostly but I still sneeze a few times a day. Prior to CLL I never had any allergies at all. We were just taking about this very thing here at Health Unlocked a little while ago...I think I am allergic to having CLL.
To be more specific I have always been allergic to the outdoors especially in spring but it WAS controlled with OTC drugs
After CLL it it completely out of control to the point I could not function well and the fluid was building up in my jaw and causing dental abscess
Naturally the oncologist says it can’t be the CLL and as usual it’s my problem to track down a solution which in MY CASE was a nasal spray Azelastine HCI BUT but you have to work with a doctor or ENT and arrive at a SAFE solution for your circumstances
I agree about the dental complications, Tom. I've certainly had upper respiratory infections that got into maxillary sinus, and left me with a tooth ache that my dentist could clearly see on an Xray. Amoxicillin usually knocks it back after a week or 2.
It's all connected to CLL ... how many things do we hear about where our fillow patients say, "Ever since I got this great immune system cancer, I no longer have a problem with x ..."?
My allergist/immunologist and CLL experts at MD Anderson that Neil mentioned in another post recommend using a neti pot for upper respiratory infections. I'm now using a spray bottle sold by Neil Medical, the people who sell most of the neti pots in the U.S., I think. It's a little easier for me to use - less leaning and turning my head over the sink. My allergist gives me one at every an annual visit.
This sounds like pollen allergies, since you mention relief in winter. I currently have an upper respiratory infection that comes with sneezing - but just from one nostril. What the heck?
Much depends on your symptoms and triggers. Is it itchy nose? Sneezing? Itchy eyes?
My allergies got steadily worse for years before my diagnosis, and it may not be related to the CLL. My IgGs are all low, except my IgE for the one type of grass the allergist checked. Interestingly, the pin prick tests a few years back showed several tree pollens, including oak (which are all around me), but the IgE did not show a reaction to oak. My IgG and IgM are below normal, and IgA is at bottom end of normal. They never measure IgD, I guess, because not much is free in the blood. The current theory is that IgE is more related to allergies.
I take fexofenadine 180mg (24 hour Allegra, if you don't like generic). I've also used cetrizine (generic Zyrtec), and similar compounds, like levocetirizine (generic Xysal). As far as I know, short of oral steroids, fexofenadine and cetirizine are the strongest antihistimines you can get, with or without a prescription. Benedryl is actually more effective, but has significant drowsiness side effects. I'll take it before bed sometimes, but it doesn't really provide a restful sleep (contrary to advertisements for Sominex, which is just benadryl).
I use fluticasone proprianate (generic Flonase) twich a day in each nostril. I've tried Astelin and Dymista nasal sprays, and didn't really notice a difference compared to fluticasone. But sometimes people find that switching helps. I also use epinastine eye drops as needed (generic Elestat). I had tried Pataday, but it was insanely expensive ($50/month) on my insurance for the tiny bottle, and I honestly don't feel a difference.
I don't go outside much. It's hot here in New Orleans already. The best time for me to go out is right after it rains. Several days of dry weather are the worst. Night is somewhat better.
I do have a nice, stylish, washable face mask with excellent N99 filtering that I can wear if someone is mowing the lawn when I need to get from the house to the car. I can have a minor asthma attack in such cases - I have a ventolin inhaler for that. I also have some nice, fairly stylish ski goggles that fit over my glasses that I can wear along with the mask if I really need to be outside a lot. But I really just avoid going out. I also used the mask in flu season when I had to go into the office, because of crowded elevators.
I find that hair washing, and changing pillow cases is helpful, but I usually wear a nice, Canadian, Tilley hat. I wash my face with Johnson's classic baby shampoo (not the newer stuff).
Thank you all for your detailed reply. Interesting about Sominex = Benadryl.
I just love being outdoors. I guess I will have to watch the weather more closely and get ready to truly dance in the rain, because high pollen days are out for me. Too much of a physical set back.
Sorry to hear about your allergies. I have no answers, as I too suffered a lot from allergies in the summer months. Like you, I had to learn to dance in the rain! However, the strange thing was that as the years passed, they gradually got less - in spite of my developing CLL.
Re Sominex and Benadryl..
Some brand names vary from country to country. The names Sominex and Benadryl are used for different things in different countries and don't always have the same active ingredient.
In America the active ingredient of Sominex is Diphenhydramine hydrochloride, which is also marketed under the name of Benadryl. webmd.com/drugs/2/drug-5680...
But here in the UK, I’ve been prescribed Sominex for nausea caused by Ibrutinib, and its active ingredient is Promethazine Hydrochloride. (Another of its brand names is Phenergan.)
Hi Seymour, I too was very surprised that tablets with the same brand name (eg Sominex) could have different active ingredients, depending on which country we’re in! I would have thought there was some international law/agreement to stop that happening.
I’m not usually so well-informed about generic names and their different brand names, but I’d just been prescribed Promethazine Hydrochloride (for nausea caused by Ibrutinib). The chemist gave me a packet of tablets labelled “Sominex” and I checked its active ingredient at the time, to make sure it was the right thing.
You were being so helpful in listing all the generic and brand names of things, to avoid any confusion. But Benadryl is such a familiar name that I think we’d all assume there wouldn’t be any confusion with it. Anyway, as far as I know, the active ingredient of Benadryl is always Diphenhydramine. The problem is with Sominex, that can also be other things.
Thank you Paula. Very interesting. I am learning so much about this cancer, the body, my body. Curious if anyone has tried holistic therapies for CLL. I suppose that’s a new post. I will post that tomorrow. All the best to all!
My husband had a stem cell transplant in February and he commented that this is the first time in about 25 years that he hasn’t suffered from severe sinus issues due to allergies. Definitely his allergy issues were CLL related. A transplant is a long and brutal process, but we are glad to have the blessing of no allergies this spring.
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Injection of Rituxan
root canals 
Advice re exercise and cold showers.
Did you find out you “had” CLL long before it was diagnosed?
At what point in CLL am I supposed to have reduced immune function?
