Who has found that during W&W you didn't suffer from colds,bacterial,viral or fungal infections? And immunity is strong?

I am curious if any of us currently Keep or have kept a journal to record how their immune system seems to be functioning during W&W? I have and so far,so good. No colds or infections in the last year or so,except the occasional cold sore when I eat too much almond or peanut butter. And this is something I have lived with usually twice a year since childhood. However,I thought that it might be interesting to see how people who are relative newbies have done during the first year of W&W. Any input from you CLL vets would also be appreciated ,if you can remember your first year after diagnosis.

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  • Disgnosed now 22 months. Constant infections and dreadful fatigue resulted in a blood test which confirmed CLL. Infections seem to be regular, but no worse since diagnosis although the fatigue is. I have read somewhere that people with constant sinus infections have a predisposition towards CLL and I've certainly had my share of those over the years.

    Peggy

  • did your family and relatives smoke around you all the time?

  • No, completely non smoking family.

  • Hi newly diagnosed in October 2016. Apart from fatigue im the healthiest person in my office. Only one from staff group of 40 not to have had a sick day in 2 years. Others constant coughs and colds etc. If i didnt know better i would say they were the ones with CLL!

  • Living in W&W for 16 years. In the first few years I had several sinus infections, as I had had for most of my adult life. I went to an ENT Dr. and had an operation in which he enlarged a sinus drainage passage. Since that time, I have had maybe 3 episodes of sinus infection--and after I started using a saline nasal spray, those have (knock on wood) stopped.

    I had a viral deep congestive event winter of 2015 that took 2 prescripts of antibiotics. So far nothing since. (cross my fingers) We are currently having the coldest spell of this winter, so here's hoping!

    However, herpes simplex with its cold sore appearance was plaguing me. I have, for 3 years now, had a Valacyclovir prescript on hand for the first indication. It works well for me and seems to make the time span longer between happenings.

  • My husband, who doesn`t have CLL, always had herpes simplex and what works for him is the first sign of pain or sore he takes L-lysine and it keeps it from getting worse. I told him if he would take it everyday or at least for a week each month maybe he wouldn`t get it. I take it when on cancer treatment and I get a sore on my tongue or inside my mouth, goes away that day.

  • Welcome to the forum.

    I was diagnosed with CLL in 2008 at Binet stage A, I was 53 years old then. My symptoms at the time were extreme tiredness, fatigue, and night sweats, common first symptoms for a lot of CLL’ers. During the two and a half years I was on watch and wait my biggest problems were reoccurring sinus infections. After about a year it got to the point where medication (antibiotics etc.) was just not touching it so I ended up in hospital to undergo surgery. I had functional endoscopic sinus surgery (FESS) to improve the drainage of the sinuses and at the same time they removed a number of nasal polyps. I note from Peggy’s reply that she also had her share of sinus problems but I did not know that folk with these problems have a predisposition towards CLL, we learn more each day. I also see that cllady01 has had sinus problems as well so maybe there is a connection?

    Take care and pleased you are avoiding the colds and infections.

    Kevin – Essex, UK

  • I have been on w and we for 10 years now and every winter have many colds all lead to sinusitis and usually 2 infections with it, often get one in summer too, this winter been constant, really poorly and very fatigued with it, I thought it was just me so it's interesting to read this

  • Why don`t you try a product called wind screen or jade screen astragalus? I noticed astragalus doesn`t increase my white cell count. Also Cat`s claw can be used in place of echinacea and if it is minor infection I use chaparral. Oh about the fatigue you can try red root. And licorice if you think it is adrenal exhaustion and not thyroid issues . I pretty much never had fatigue during W&W because I had a good herbalist that understood my constitution. The only time I did have tiredness was in between treatments and all my thyroid tests came negative so went for adrenal and licorice root. Didn`t even have to take it long. I eat licorice-anise logs when I feel nausea or queasiness.

  • On watch and wait 6 years unmutated 11q. Probably stage 4 now. Last 6 or 9 months no infections previously maybe a cold every quarter lasts 3 to 5 days. My IGs all sub normal. 2 young kids at home. Take supplements but who knows and hope it lasts. Good luck!

  • Diagnosed in October of 2016. Most likely started as early as 2011, but definitely by 2013. No major infections or illnesses since 2011. One upper respiratory infection that required extra antibiotics. Recently flu and fever went around the school I teach at and in my home. My own children were sick, 100 kids absent and 12 teachers out. I remained fine. I seem to be doing well. I have some minor skins issues that are new, but all else is good. I lost 15 pounds because of the stress of diagnosis and finally got in a better state of mind and gained 20 lbs back from going to the gym, lifting weights and exercising. I am 46. 13q mutated.

  • Now quite a few years in and things have remained pretty constant including year one. Poor reaction to mossie bites and insects in general. I stay away from sick people but if I do get a cough / cold / fever, it's usually quite severe and long lasting.

    Mike

  • I also have severe reaction to no seem bites and have allergy problems in the fall from the mold and mildew during harvest season. Other than that I have not had issues with infections so I guess I am fortunate.

  • I also get a bad reaction to mossie bites and have had to attend hospital for a persistent one. Read that people with CLL are prone to bad reaction to bites. My doc never mentioned this to me. Also lots of colds and now stomach problems

  • I always wonder if our white blood cells are not functioning at a100%,isn't it plausible that our body would compensate somehow and perhaps provide some other kind of immune response? As weird as this may sound, I noticed that my body temperature is a full 2 degrees less than it used to be. This has been the case for the last year. I switched to a macrobiotic diet this year and i was thrilled to see that this winter was the first time in decades that I did not have any nasal congestion. And this was the first winter in two years where i did not have a bout of bronchitis. A lot of that probably had to do with cutting out dairy,white flour foods and sugar. I also forced myself to walk or jog a few miles almost every day. But the drop in body temperature has my GP baffled. He believes that it means that my body is actually fighting off multiple infections,which seems counter intuitive to me. You'd think that I would be feverish,if that were the case? I have a very different take,I wonder if CLLers have a tendency to initiate some kind of immune response that tells the body not to raise temperatures? I am talking about people who are treatment naive. Perhaps something that is attacking our body that is turned off when the body is cooler? But I have noticed on several forums that people are constantly claiming that their body temperature has decreased a couple of degrees.

  • B-lymphocytes (and CLL cells are just one, sometimes more generally genetically related B-lymphocyte clones) generate messenger cytokines and chemokines, which are involved in coordinating the immune response. I believe that's behind why a common B symptom of CLL is night sweats and why so many of us suffer from poor temperature regulation. It's an area that could do with more study.

  • Well evidently my body is making up for all the years I didn`t have a fever and felt sick! Zydelig is sending up the temp!

  • I don't get sick much and my body temp also runs low. I have only had fevers a few times in my life.

  • I think food enzymes are a good edition as if there are any issues with dairy or wheat or other really helps me. Always had digestive issues since a child and I noticed before the enzymes as my WBC rose my digestion got weaker but during treatment need the help. Works for me.I am making more gluten free things also. I also since DX have had a body temp. of 97.4 and I feel normal at that. A fever at 99 for me feels like 100. Before CLL I would get a really high fever and in an hour or two I felt fine. Then the fevers weren`t coming anymore just a feeling of flu-like symptoms and DX.

  • Another thought regarding how we feel with CLL. I noticed that as the weather became warmer my WBC/ALC counts dropped consistently from March -October. I read on another site that researchers had theorized that allergies were putting some CLLer's immune systems into a hyper state and that this might actually had thwarted the disease somewhat. I am curious if anyone here notices that they feel stronger when the weather thaws and if they have found any correlation with warmer weather improving counts and possibly lessening fatigue?

  • There are spreadsheet templates available for you to track your blood counts:

    healthunlocked.com/cllsuppo...

    I've been tracking my counts for over 8 years and indeed in the year I had bad hay fever, my eosinophil count (white blood cells specifically involved in allergy response) shot up 12X my average to just above the normal upper limit.

    I've noticed some seasonal variation in my lymphocyte count, but it is not consistent.

    Incidentally, we encourage the sharing of web references for those that want to explore further.

    Neil

  • Only diagnosed a few weeks ago and seeing haematologist for the first time next week but you've just inspired me to keep a diary. I was planning on keeping a food diary to help me lose weight but now I will also include how I'm feeling.

  • I am one year in and have amazingly avoided colds. My husband caught two that I avoided. I had a lingering sinus thing but have cleared that for the last three months. I am assiduous about hand washing and my grandchildren are getting older and less subject to germs. I also have everyone on alert not to come near with germs.

  • One year in, diagnosed after 18 months of upper respiratory infections, sinus, and mono. Had 3 antibiotics in the first 3 months of W&W. Started IVIG treatments in September. Have not had a serious infection since then. A couple of times I thought I was getting a cold, but it never amounted to anything. I did stop going to the gym due to germs. Like Jettyguy, my temperature has dropped about two degrees. My normal temp now is around 97 drgrees. Every evening about an hour after dinner my temp goes up to 99 or 99.5 for about 15 minutes and then it drops back down and I have chills for the next half hour or so. Even when I was very sick with the infections before I was diagnosed, my fever never got above 101. My doctor also doesn't know what to make of the lower temps.

    BeckyL

  • In my fourth year of W & W, with CLL, haven't had a cold in four years, wash my hands and stay away from sick people. I get a flu shot every year, had the pneumonia shot, and the shingles vaccine. I go to exercise class, weight class and ride my bicycle. Try to eat healthy, doesn't always work. I eat Greek yogurt everyday.

  • I understand that the shingles shot has a live virus so if one has CLL that we are not to get that shot. Am I right? I react to the flu shot so no longer get that either.

  • Yes, the currently available shingles vaccination is a (attended) live virus and we should never have any live vaccinations, as we risk getting ill from them, due to our compromised immune systems.

    An adverse reaction to non-live vaccinations could put you at greater risk than the reward from likely protection (we typically don't see the same level of effectiveness as healthy people), so avoiding these can make sense.

    Neil

  • Interesting to see that you had a shingles vaccine. I was advised not to as its a live virus linked to chicken pox. So pleased to hear that it did not affect you.

  • Hi Jettyguy, I'm just coming up to 1year w&w in May. I've always had a good healthy immune system and luckily I haven't suffered from any colds or flu in the past 12 months. I did have a parasite that knocked me around a bit but my Dr said that would have happened to anyone. My only symptoms so far are fatigue and I've noticed that cuts or scrapes tend to take longer to heal.

    Health and wellbeing to you 😊

  • Hi there, I was diagnosed in 2013 and still on watch adn wait, though in a stage of heightened anxiety at the moment as check up on Friday and I'm not happy with way my lymphocytes have been steadily rising and not dropping! 😱But to answer you, for the first 2 years ago after diagnosis I had the odd cold but nothing more, really. I have an annual flu jab and will be asking on Friday re pneumonia jab as that seems to be a recommendation. However, in the last 6 months I've had several colds, either one after the other, or a continuation, not sure which! In December I had terrible sinus symptoms - again, a new one for me- and I fact now I've got ringing in my ears and dizziness, all of which is thought to be residual post sinus/viral stuff. Perhaps it didn't help that until recently I worked in a GP surgery so lots of coughs and colds, although I took very little sick leave and was healthier than a lot of my colleagues! I have found the toughest thing about watch and wait is that you watch and then ruminate, panic, worry, about all sorts of symptoms which may or may not be CLL related. It's so easy to become neurotic! It sounds as though you're really healthy, and I'm sorry my reply has rather veered off course, as your original question was specifically about th first year after diagnosis! Sounds as though you're in really good shape so no worries!

  • Hello Jettyguy - I'm glad you raised this as I have been wondering why I am so free of illnesses.

    I was diagnosed 18 months ago Stage A but have had CLL for at least two years. It's mutated. I'm 70, fit and very active. I've not had a cold or anything for a very long time - while others around me get them. I wash my hands all the time and do not go to many social gatherings. I get cold sores and mouth ulcers regularly but I've always been subject to them. I'm on W&W and annual review so do not know my current bloods. Last May my neutrophils were very high which I wrote about here. I don't know what they are at the moment. I have fatigue at times but it does not affect my life much.

    I've had the pneumonia vaccs, flu jab, Meningitis B. Vitamin levels are good.

    I'm glad to hear that others are staying well too.

  • Hi. My first " cancerversary" as I've seen it called is at the end of next month. My 6th monthly blood test is due in a fortnight. I too feel lucky so far as have only had one cold and one cold sore this winter. The cold did not go to my chest so I got off lightly. I have had the flu and pneumonia injections and take OTC Ferroglobin, Vitamins, D3, B12 and zinc.

    My only symptom is a lack of energy particularly compared to my husband who is 2 years older than me.

    Am I right in thinking fatigue and a lack of energy are the main symptoms of CLL?

    The Haemotologist said W and W could last a long time even a decade and that he only wants to see me if my lymph nodes swell up.

    I am 69. I don't know if the haematologist is a CLL specialist. At diagnosis in Bedford UK, I was just sent away with a book on CLL to read.

    I have learned everything I know about CLL from this wonderful, caring and informative forum. Thank you all SO much.

  • I live in the USA and I see my oncologist every 6 months. Diagnosed about 5 years ago. He checks my lymph nodes and blood work is done each time. Can't believe they would only want to see you if lymph nodes swell!! Did that book tell you every thing you need to know and want to know?? Probably not. Good luck with finding someone who cares!!

  • It is good to read so many encouraging responses! I have had very few colds or other infections in the last 3 years though I do take care to try and avoid unhealthy situations. I have had all the vaccinations, eat healthily and get plenty of exercise outdoors. I think a positive attitude also helps. Because of CLL I am actually doing more than I would have done previously, feeling the need to achieve a bit more before the next appointment 'just in case'.

  • Hi, I was diagnosed December 2015, am on W&W, and have not had a cold or flu since diagnosis. My spouse had flu last year and this year, but I did not get it. When diagnosed, my hematologist advised me to avoid using the bus and large gatherings. I have not done either of those things, but I do avoid sick people, I avoid shaking hands, avoid touching public surfaces, I wash my hands a lot, and I use a mask if someone near me is sick and I can't go somewhere else. I take supplements and run for exercise 3 times a week. I do have fatigue which seems to fluctuate, and some lymph node swelling. Although I have been free of colds and flus, I have had stomach problems, something I have had for several years before diagnosis, but worse now. I don't know if it is CLL related, possibly lower neutrophils or something, not sure.

  • Thanks for the very informative responses everyone! I have kind of started an informal CLL local support group in my town on eastern L.I., NY. We are all crazy anglers and we spend a lot of our time fishing the ocean with lures from the beach. All catch and release,basically. THAT'S MY VERSION OF A FISH TEST:) I know 4 rough and tumble, avid saltwater fishermen, who have this PITA disease! There is a common thread among us....those who eat well and exercise seem to function better. I personally hate this disease with such a passion, I was willing to change my previously sugary and poultry/meat eating lifestyle for a new one that only embraces the healthiest,most nutritious foods I could eat. It baffles me,that some of my close friends have the attitude that they'll just continue eating poorly and being couch potatoes. I have two of them on a very moderate version of my diet and lo and behold, they lost 15 and 20 lbs, each. What do you know? They have more energy and feel better than they have in years. I don't expect anyone to endure the rigors of a strict macrobiotic diet,because you really have to want to beat the hell out of your version of the disease to do that. And frankly,some people just want to live their lives without making nutrition changes and I respect that,too. Like I said,"I HATE THIS DISEASE", so anything that I can do to slow its progression ,I'd do!! But as a guy with LOUSY markers, I can attest first hand,eating wholesome foods ,initially is a challenge,but then it becomes easier and before you know it,you wonder why the heck you didn't do this before you were even diagnosed? I swear this to be true! I watched a lifelong liver condition disappear. A dangerous acid reflux problem simply vanish. Allergies go bye bye. And a platelet problem improve dramatically. All this happened for a former pizza,bagel and sugar addict. It took six months to lose 40lbs. I can only promise that the health benefits for people like us are enormous and as importantly, your FATIGUE may really improve,if you just eat better and do some moderate exercise. My fatigue simply vanished. I apologize for being so preachy!!! And what I say comes with the caveat that we should all only do what we are most comfortable with. But perhaps it's helpful to know that we have the option to make gradual moderate changes to try and feel our fittest,even with CLL.

  • Prior to diagnosis I had at least one very bad respiratory infection each year. It would usually last months, and I would end up on antibiotics, asthma treatments etc. After I was diagnosed, I received the "extra strength" pneumonia vaccine, and really my year on W & W was the healthiest I had in a long time. SO much so that, I was totally surprised when my doctor said I needed to start treatment immediately. Other than being a little fatigued, I felt fine. After the initial testing was completed I had been having my bloods checked every three months, and they seemed quite good. As I approached the year "anniversary" of diagnosis, my hematologist suggested I see a specialist as my count had been rising slowly. I saw the specialist and counts looked good. Really was on cloud 9 and knew we only had to wait for the results of my second FISH test to come in. When they did, I was called and told I needed to start treatment the next week (imbruvica) . My first FISH test was Trisomy 12 and 17p, but my counts at the second were almost all 17 p. Cannot remember the percentage now, but very high. My doctor was amazed I felt so well, and mentioned that I would have been feeling very bad soon. I am so grateful for that year.

    I hope that you are well for many years on Watch and wait!

  • Well,I bet that I can speak for most of us,when I say," I wish you a complete recovery and and a swift and easy healing process!" Mostly,I hope that by the time you are starting to feel a 100% better,they'll be new treatments that will ultimately make your version of the disease,nothing worst than an annoying allergy. I'll be bold and say perhaps a complete cure. Stay well!

  • Thanks so much. I have been so fortunate with my timing :). A few months before I needed treatment Imbruvica was approved for 17 p patients, and recently Venetoclax was approved. My doctor mentioned last visit that it was time to think of switching. So really I couldn't have timed this any better. I am so thankful for all these wonderful researchers!

  • On my first year of watching Wait I did not get any calls but got cellulitis ( skin infection ) twice.

    My immunity to colds seemed very high.

  • HI Jettyguy,

    Diagnosed in January 2014 and on w & w. Prior to diagnosis I suffered with sore throats and chesty colds, sometimes turning to bronchitis. In fact, I left a job working with children in a school because I was consistently ill. The first couple of years after diagnosis I had a couple of heavy colds. This year I have had no colds, unusual and I have been thinking about this. I had the flu jab, pneumonia and HIB vaccinations and am no longer in the office or working with people as I have retired. I try to stay away from colds and flu but mix with people and go to concerts, etc. I did have shingles last July and get mouth ulcers. It has been interesting reading about others experiences. I have decided to make an appointment with a CLL specialists, as I want to do all I can to stay healthy and am getting lots of conflicting advice. However, I feel "do I need this appointment?" I will attend.

    I have had periods of fatigue and do not have the energy I used to have, but I am ageing?

    I am active and walk my dog every day and do enjoy life.

    Thank you for interesting post.

    Seven6

  • Hi, I'm also quite new to this site, but regrettably not to CLL. At 63, have been on W&W for 13 years now. To add to the above discussion, I'm sharing my experience with food intolerances as this may help others. (And BTW I am SO grateful to have found this wonderfully supportive and well-informed global community❤️)

    A decade before my CLL diagnosis I was tested and found to have numerous food intolerances (not IGE-mediated traditional allergies) to wheat and all gluten grains, dairy, soy and other common foods. I removed all of these foods from my diet, which took some learning about how to eat healthy without them, but this helped with fatigue and other symptoms at that time.

    As my environmental medicine doctor put it, when the body's immune system is "busy" dealing with allergens consumed every day, it isn't as alert to fighting off cancers. So I do recommend getting tested for food sensitivities as they are much more common than even many doctors realize. Sinus congestion and asthma can be symptoms of allergy.

    Before diagnosis I had a few bouts of pneumonia/bronchitis and annual cold sores, but haven't had any after I received the pneumonia shot. So my ongoing symptom is a low-energy feeling (fatigue) and I seem to get about one "regular" cold a year. Have had a few skin issues including a recent wart virus that repeated treatments won't get rid of.

    But touch wood, I only require an annual check with the haematologist and my counts, while they do fluctuate, are so far in the normal ranges.

    I

  • All so true. I had a similar discussion with a few people on another CLL site. I brought up that fatigue is sometimes manifested when you HABITUALLY eat poor quality foods and especially if you eat them shortly before retiring to bed for the night. I talked about how the body has to work harder to metabolize some foods and that we should not be surprised if eating sugary processed foods CONSISTENTLY, sometimes leads to fatigue. That went over like a lead ballon. God forbid you mention SUGAR...people love their sugar and they'll throw down the gauntlet. There have been three heralded cancer institutions manifesting literature about the effects of sugar on cancer patients. One study was done at Sloan kettering,another at MD Anderson and a third at DANA FARBER. They did not conclude that sugar caused cancer ,as is so commonly bantered about,but at least one of these studies concluded that the overeating of processed FRUCTOSE and having a high GL(glycemic load) caused metastatic conditions for certain cancers. There's an article by Stacey Kennedy, of DANA FARBER called DOES SUGAR FEED CANCER? It's a must read for cancer patients.

  • Several infections since diagnosed 2012.

  • I have been on W&W for 1.5 year. High white blood count (150) and low immunoglobulins. I have had flu vaccines and pneumonia shot and live healthy life...no smoking, little drinking, eat pretty well and exercise regularly. I have had a few colds,sore throats and sinus congestion, but no major health issues. My CLL specialist said last visit that if I didnt have infections I likely wouldnt. Not sure why. Will ask next trip. I have had lots of skin issues though...basel and squamous cell...and lots of itchy pimple like rashes and seems to be eczema maybe...Has anyone else had problems with itchy skin and rashes??

  • Yes for a couple of years before diagnosis I noticed a severe reaction to the Scottish midge - as we camp in Scotland every year this was quite a problem. Since diagnosis I easily come up with an eczema rash which I never had before. I have worked out I am allergic to SLS which is in so many products. Ok if I avoid this. Any help on midge reaction welcome I end up wearing a head net body covered but the little creatures find a way in!

  • I was having severe reaction to no see'um bites(I think that may be the same as a midge) for 5 years before being diagnosed with CLL. Also had itching on my rib cage usually at night. Since being diagnosed, I wear the head net outside my home ( I live in a wooded acreage ). I do get a few bites elsewhere but they do not cause as much problems as when I get bit on the head. I get a swelling as big around as my hand and as thick as my hand. Head to the doctor for prednisone and an antibiotic for cellulitis. Made it through 2016 without that issue!! The itching on my rib cage does not seem to bother much any more. I only have the issue about once a month or every other month for a night or two. I use hydrocortisone ointment to stop the itching and that seems to work well for me.

  • Interesting post!

    I started keeping a health diary a few months after my diagnosis and have always tracked my blood test results. These were initially monthly, so I was able to assess whether there was any impact from any efforts I made to improve my health. Unusually, I was diagnosed from investigating the cause of my worsening neutropenia. My bone marrow was 54% impacted and the CLL (initially a SLL stage IV presentation) suppressed my neutrophil production, so I became severity level 4 neutropenic. At that level of neutropenia, we may not have sufficient neutrophils present to avoid infections from the bacterial, fungal and viral load we all carry normally without consequence. Consequently I became very ill with CMV, which I believe further suppressed my immune system, so I was regularly fatigued and typically running an elevated temperature most afternoons. Warts spread and grew large on my hands and fungal infections once established were very hard to eliminate.

    I was very physically fit before diagnosis, but the CMV and regular infections destroyed my stamina. Because I was still reasonably fit, I found it easy to overdo any exercise and would wipe myself out without any warning signs and subsequently spend several days with very bad fatigue. Very gradually increasing my exercise and boosting my vitamin D into the normal range led to my very slow recovery. I also found I had to isolate myself to stop frequent infections. (I found I'd become ill several days after visitors called in and after chatting for a few hours, they'd mention that 'they weren't well last week, but were fine now'.)

    Personally, I believe most of us can make low cost, readily modifiable changes to our routine to improve our quality of life with CLL and reduce our infection risk, such as improving our fitness and diet, keeping up to date with non-live vaccinations and taking additional precautions to reduce our risk of infections. I can recommend the many community recommended tips collected in this three part series by Paula and Kevin: healthunlocked.com/cllsuppo...

    Neil

  • Yes so far so good diagnosed in Dec 16 have improved my diet and was juicing over the winter had an amazingly light 3 day cold. Followed by a slight cough which everyone locally had.

  • 7 years on watch and wait WBC 112 usually a bit of a cold for a few days and then that's it for the year - except this year had the Christmas cold then a never ending cough till late Feb but a lot of people had that so pretty boring really on that front.

    Jules The Flyer

  • I was diagnosed in 2013 and wasn't really sick until last week. Whatever cold is going around this year is a doozy! I've heard from many at work that had it and it kicked their butts, too. But in the past, whenever I felt a cold coming on, I took echinacea, vitamin C and Zicam and this usually nipped it in the bud.

  • hi jettyguy. i see you suffer from occasional cold sores. i would recommend taking lysine for that. also - because of your predisposition - i'm wondering if your doctor has recommended you go on daily Valtrex so as not to get shingles? i found that i was getting more outbreaks before i got diagnosed and there were HORRIBLE. as much as i don't like taking meds - my oncologist recommended daily Valtrex - and my life is so much easier now. hope your wellness continues! cheers~

  • Thanks NINAP. I take a 500 mg lysine capsule daily. My diet is very arginine, so i am learning to balance it with eating fish and other foods that are more lysine in content. Lentils,Kale,turnip greens, cabbage,Edamame,squash,pinto beans,summer squash,navy beans,soybeans,mushrooms,parsley,zucchini ,wakame,celery,beets,ginger root, and apples have a higher ratio of lysine to arginine. Most greens are neutral or slightly higher in arginine. Nuts and seeds are packed to the brim with arginine. The bottom line......I balance my meals with a strict macrobiotic diet. I don't eat dairy,poultry or meat,so I have to understand the lysine/arginine ratio in all the foods that i eat. I am getting the knack of it. I choose to avoid drugs whenever I can and that's just my personal preference. However,thank you very much for your input. If i feel a cold sore coming on ,i cut back on the arginine food and I increase my supplementation of lysine. There may come a time when i have to take an anti-CLL drug,with side effects that are unavoidable or somewhat harsher than i would prefer(god forbid),so whenever i can make a choice to avoid drugs designed for other purposes and still get the results I am looking for, that's my inclination. Continued good health to you and yours!

  • I used to suffer at least two cold sores a year. But I have not had any over the last two year's, after using a light pulsing thing called LipZor 1072. It may be a coincidence?! I'm not sure.

    I was diagnosed with early stage CLL three year's ago and have not had any colds, or bad health. Although I do suffer from fatigue, but that's probably from insomnia.

  • I was diagnosed 8 years ago and haven't had any issues with repeat infections, fatigue or anything else. I get 1 or 2 colds a year mainly because I work in an open office plan environment where we all like to share the love. My colds tend to last for about 2-3 weeks but that's because I don't take decongestants to dry my nose up since they give me insomnia. Can't seem to get the original Benadryl anymore - the one that made you drowsy - which is a pity.

  • No longer a newbie having been on W& W for nearly 11 years and now underway with FCR (just completed cycle 2).

    Yes, I keep a record of illnesses of all types and have found this very useful to look back upon. Especially keep good notes about conversations with consultants, CLL or whatever. It is surprising how the memory fades. I often also jot on the kitchen calendar when I have a sore throat or something that does not really materialise into a cold etc.

    Definitely worth doing.

    I think I was suffering quite a few colds and viruses back in 2007 when I was diagnosed with CLL and is partly why I went to the doctor and had that first fateful blood test!

    All the best,

    Holly

  • I actually didn't have any sinus infections or major infections. When I was DX I started seeing an herbalist and having acupuncture. I don`t believe I saw a PCP either as anything of concern was taken care of by my naturopaths. It wasn`t until 2013 I came to close to someone who had a chest cold, was smoking and just came out of military. Three days later I was so sick I was in ICU for pneumonia. The IV antibiotic Vancomycin drove my blood count down and affected my kidneys. Plus the stupid doctors kept giving me heparin and I was bleeding out on both sides of my stomach. I could sit up,get up walk and had leg packs on to keep blood moving when stationary so no need for BLOOD THINNER!!. This same hospital just bought and merged with my cancer center. I am in the process of going to a better rated cancer center. After FCR I had all kinds of rashes on my face and chest and just before my cancer became active again I got a upper respiratory event that wouldn't respond to herbs or antibiotics. Finally my PCP gave me a kenelog shot and it calmed down I did a breathing exercise to keep my nose unclogged. I still struggled with mucus from my nose even during ibrutinib. I also developed a sinus infection when starting zydelig but since 7 day antibiotic I am happy to say my nose is clear! Now I`ve exchanged it for a continuous fever and chills. che sara. Sorry for the book. did you like it?

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