I’m relatively new to the CLL community. My diagnosis was incidental while following up with blood tests post COVID infection. I’m currently on W&W with a Rai score of 0.
This community has been a great support and I’ve learnt a lot here. It has given me hope & reassurance. I’m still confused about a few things and I’m sure my doubts will be answered after this post
What I’ve learnt so far
1) CLL is not a death sentence. Most likely all will take CLL to the grave rather that succumbing to CLL
2) New & better treatments are emerging at a rapid pace.
3) QOL with new treatments is increasing
4) EGCG, Curcumin taken in alternating doses perhaps helps, but at the same time may cause some live issues in some people.
5) W&W can be a LOOONG period. A period of over 10 years is also not uncommon. I wish, pray, and hope I & all in W&W fall in this category.
6) We have to mask up, exercise, eat healthy, wash hands frequently, maintain hygiene, etc, etc.
Having understood the above, I’m wonder how W&W period will be. I would appreciate some feedback on this period:
1) During W& W, do people fall sick more often?
2) Does catching the seasonal viral flu mean taking precautionary antibiotics and anti fungal meds?
2a) During W&W if we take seasonal flu vaccine, could it lead to aggravated reactions?
3) Does dental cleaning, filling mean taking antibiotics before and after treatment?
4) Does W&W mean no more favourite activities like golf, skiing, dining at favourite restaurants etc?
Ever since I was diagnosed, I’ve been very jittery. I’ve become a hypochondriac. Every single ache, twitch, cough or itch, I feel I’ve graduated from W&W or feel perhaps Richter’s transformation is at play. Whoever coined the phrase “Ignorance is bliss” is spot on.
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nuji
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Depends on how impacted your immunity is by your CLL - and how much you better you become at taking defensive measures to reduce your risk of infection and improving your general health and fitness. A rough guide to your general level of immunity are your immunoglobulin blood counts (IgA, IgG and IgM) and your absolute neutrophil count.
2) Does catching the seasonal viral flu mean taking precautionary antibiotics and anti fungal meds?
Any respiratory illness puts you at increased risk of pneumonia which is a common cause of death with CLL. There are many possible causes of pneumonia and you can protect against the common bacterial causes by having two different pneumonia vaccinations per this post: healthunlocked.com/cllsuppo... Get up to date with all your non-live vaccinations.
2a) During W&W if we take seasonal flu vaccine, could it lead to aggravated reactions?
I'd say that this is highly individual. Some of us have more aggravated responses to insect bites. I react much less than I used to do. Unless you get a severe reaction (and you should be asked this before each vaccination), it's going to be far less life threatening than actually getting the flu (or other illness you'd be wise to be vaccinated against). It's wise to stay in the clinic where you can be observed for at least 15 minutes after every vaccination - just in case, but how often have you seen anyone react badly to a vaccination? mayoclinic.org/diseases-con...
3) Does dental cleaning, filling mean taking antibiotics before and after treatment?
Depends on your answer to (1). Ask your specialist if they consider you need prophlactic antibiotics before any dental procedure: healthunlocked.com/cllsuppo...
4) Does W&W mean no more favourite activities like golf, skiing, dining at favourite restaurants etc?
No, just be more mindful of your potential risk. The pandemic has taught us all how important engaging in our favourite activities is for our mental health. However, it is important to be more aware of our potentially increased risk of infection with specific activities, so we can take appropriate steps to reduce that risk - social distancing (sitting out of the way in a restaurant, not where people are always passing for example), mask wearing, hand washing, etc. We might consider a more prudent approach is to avoid some activities or do them in other ways - e.g. choose a different venue, 'visit' by video or take a car rather than public transport, avoid peak travel times, etc.
Welcome to this website nuji ! Your background understanding of CLL already is impressive and so are your posts like this one, very insightful questions, etc. Keep em coming! As you know there are lots of very smart n helpful folks on this website.
I’ll take an initial stab at your questions being somewhat similar to your situation in W&W mode myself, coming up to 1 yr dx anniversary next month, no treatments, rai stage 0 like you and am in “earlybird CLLer stage”.
My take on Your questions nuji -
1- So far so good for me, answer is no BUT reading about CLL is that we tend to be more vulnerable to infections/ illness since our immune system has been banged-up, not as up for the fight against viruses (like covid). So with that said I’m sure you’ll hear from longtime non-earlybird CLLers that many will reply yes to this question.
2- Good question, wrong person I am at this point to comment because I hav’nt come down with flu since being dx (good mask wearing and washing hands has helped?)
2a- Not for me no reactions on last yrs flu vaccine and I’m a regular on getting it too. Some yrs I have had typical mild/short duration reactions, not a big deal. The whole reaction concerns with vaccine shots versus the huge typical long term payoff getting the shots always has me baffled why it’s a big deal? I think from my childhood background having several major local anesthetic surgeries on my head n face taking on numerous shots of novacane in the head n face n watching a hammer bust my nose etc… were classic “initial pains but for long term gains”. Hence vaccine shot reactions = initial pain (some) but they have long term gains … gotta look at that way I suggest. But I digress.
3- Interesting Q. My dentist treats me same now as before dx, he knows about my CLL. So for me no, but again you’ll probably get varied feedback on this Q.
4- Ahhh my fav Q you asked. You appear active at 56 (read your previous posts) with activities that I too enjoy at 63 … skiing check, 60 days in last winter no difference from before dx, golfing check weekly I hit the links just like before dx … but CLL still hasn’t straighten my shots out! Lol, dining well why stop with eating out?… except My wife n I either takeout or eat outside due to covid (mindful of risks like AussieNeil noted) n anything else you liked to do before your dx, I suggest keep right on keeping on it !!! In fact, IMO, by stopping will only bum you out with down time to worry about CLL, a waste of time IMO.
Very important …don’t let CLL, in your current W&W mode, take control of you… you take control n keep doing the things you love to do (again weighing out the risks). The experienced W&Wers will likely say the same and one last note of hope…
You mentioned a 10 yr till probably treatment is not uncommon but… how about no treatments ever? My CLL doc and others on this site stated that’s a possibility and roughly 1/3 of us may be blessed with that fortune.
Don’t sweat n worry about the small stuff n … think big picture. You sound like your overall feeling good, so rock-on and enjoy.
Well those are my takes. Hoping your W&W journey is infinitely long and you master the moguls, score a few birdies, and enjoy some great meals along that journey path … live life nuji!
👍👌. Like I said, Hope wish and pray that all W&W comrades fall in the 1/3rd category or at least 10 year category.
I’m jealous that you got to ski. I got tied down because of this damn virus and could not fly out.
Golf - post diagnosis, I have reduced 4 shots (don’t ask for my HC 😜) since I have slowed down my swing and taking it easy now.
Thank you very much for your kind words of encouragement. I pray your reply to question 1 saying “so far, so good, changes to “very long and very good”
Awesome that CLL is helping your G-game! …. Way to go taking the small positives out of all this, love it!
Thanks for your response to my Q1 response. Yeah it’s something we all know to be watchful n careful about (as best we can).
Have you considered a road trip to the ski mts versus planing it ? We just did a 3,000 mile RT for a key family reunion back in Michigan, avoiding the plane thing n taking our pups too, a good thing. Gotta say that road trip was great. Mask-up at road stops and wow gotta say the US definitely trashed their masks in many states, that’s for sure!
Stay safe and well nuji! Good luck with your CLL journey.
You seem to have grasped all the basic facts already ....
When the Covid pandemic struck, my son told me that I was a 'trendsetter' ... suddenly everyone had to be more aware of the potential increased risk of infection ... we have been doing this since 2006 due to my CLL.
I am still on W&W, and haven't had treatment as yet.
AussieNeils answer to you question number 4 ... ' No, just be more mindful of your potential risk.' ... describes the way that I now approach things.
I won't offer any advice about golf though ...
On one of the few times that I did play, the club professional, who was then in his eighties, had a word with me when I came off the 18th hole ... he told me that I had the best timing of a swing that he had ever seen ... it was also the worst swing that he had ever seen, and how I still managed to hit the ball amazed him .. ( I am right handed but swinging with a left handed grip - all my family are left handed except for me. but some things I do favour left handed) ... he gave me a few pointers ... he was right !
Halfway through my next game ( scoring heavily ), I gave it a go ... every shot from the tee went straight down the middle, the ball was actually going where I wanted it to ... I hit +5 for the last 9 holes ...
It's a pity that he didn't tell me all this when I was 16 !
I totally identify with Neils ... ' We might consider a more prudent approach is to avoid some activities or do them in other ways '
Don't let CLL define you ... just be aware that you have to be a little more careful when doing things ...
Thanx ygtgo. Really happy for you about your W&W. Keep it up. Hope your scores have been improving in golf as well. Thanx for your positive reinforcement.
Everyone is different. I was on W&W 12 years. I had about 2 or 3 colds. Hardly got sick. Maybe caught flu once. Bugs don't like me. Hardly get bit. Never needed any meds for dental work. Before covid I did all kinds of activities without hesitation. Felt great all those years. Would never know I had CLL. Around my 10th year I developed nodes in my neck. But that was it. Went for my every 4 month check ups. 🙏💕
A. We are all different; but yes, you are more likely to have immune system weaknesses that can contribute to infections and in some cases in secondary cancers, particularly skin cancers. There is an old Mayo Clinic study that found 25% of their newly diagnosed CLL patients had hypogammaglobulinemia (a very long word I seldom spell correctly), meaning your antibodies are not what they should be. If you are concerned about this, ask your doctor to test your IgG, IgA & IgM, getting a baseline test result is a good idea if you hope to be on W&W for a long time. If your antibody test results are not good or decline over time you may want to consult with an Immunologist who works with CLL patients. Immunologist have made significant improvements in the quality of my CLL life.
Q. Does catching the seasonal viral flu mean taking precautionary antibiotics and anti-fungal meds? During W&W if we take seasonal flu vaccine, could it lead to aggravated reactions?
A. I get a couple of high dose flu shots each year, never had a problem. That said, I have done prophylactic antibiotics for other reasons and had bad reactions to different types of antibiotics. The only antifungal I have been on was Voriconazole which gave me hallucinations and elevated liver enzymes. You have to be as careful with drugs as you are with illnesses.
Q. Does dental cleaning, filling mean taking antibiotics before and after treatment?
A. Ask your doctor and maybe your dentist.
Q. Does W&W mean no more favorite activities like golf, skiing, dining at favorite restaurants etc?
A. Nope, just be more careful, especially during COVID time.
Your statement “Ever since I was diagnosed, I’ve been very jittery. I’ve become a hypochondriac.”
My response: we all do some of that and it is OK, especially if you turn this feeling into a management technique because CLL is a manageable disease. The best management tip I can give you is see a CLL specialist rather than regular hem/onc. Over time as side effects occur, ask your CLL specialist for referrals to other types of specialists who have experience working with CLL patients. Building a team of doctors who have experience with other CLL patients means they are better prepared to meet your needs. If you are going to be on W&W for a long time select younger doctors.
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