Here l am almost 5 years into a diagnosis of CLL.
Just ‘ idling’ the time watching and waiting! I have not been able to adjust really! Illness has followed, UTIs, chest infections etc.
However my white cell has now dropped to normal limits! Well that’s a relief ! Is this a cure! Who knows? GP said it is not happening ! CLL does not at present have a cure!
So what do you suppose is happening?
Artygolf!
Hopefully you are in the ~1% group of those who have CLL which undergoes spontaneous remission, such as covered in this article:
onlinelibrary.wiley.com/doi...
Neil
well, you never know....when I had renal cancer I was in the minority for longevity yet here I am 11 years later. Even my remaining damaged kidney's function has been improving into the normal range!! What is up with that? I also had endometrial cancer and got through that but sooner or later this train of my good fortune is bound to run out.....thinking positive and fighting and I might just be that 1%!
I was diagnosed in 2009 with an enlarged Neck Lymph Node (but labs showed CLL 5yrs earlier, looking back). My original Oncologist after having that lymph node biopsied, told me that the symptoms would ‘wax & wane’ or come & go. And my WBCs did exactly that, I went from 10-15 (4-10 WNL) for years! I was a bad Asthmatic with tons of Allergies so staying vigilant against contracting diseases was already part of my lifestyle. I had Cardiac Arrested 3X by the age of 10yrs old due to Bronchial Asthma & Pneumonias. My Mom kept me in a bubble for the most part & I still follow strict protocols now.
Perhaps you are in that elite group of them who will never need treatment but I would not push my luck. I highly recommend living the healthiest life you can to ward off anything that may come & correct stuff that has afflicted you like them UTIs & Chest Infections. Enjoy your Wait & Watch time as long as possible because even these great drugs, none of them are a walk in the park.
than you for the advice....the treatment is what I dread as well as any of a million complications. I am isolated as much as i can be and wear a mask in public but I have not seen my 5great grandchildren in months....I miss them...I am trying to stay as healthy as I can so when/if the treatment comes I have something to help me through...thank you for your note and taking time to talk to me
IDK what brand of mask you are using, but you can see your family while wearing one. You don't have to totally isolate yourself, just, avoid breathing in what they put out, and wash your hands before touching your eyes/nose. If they come to your place, air the room(s) out afterwards & wipe off touched surfaces with soapy water.
Skipro recommended Envo which we like for extended wear:
amazon.com/Envo-Mask-Respir...
For shorter trips like grocery, doctors, etc. I carry around these in the car or one in a pocket:
This is an exclusive group to belong to so we are pleased to be there for one another. I would agree that prevention & protection is important but living your life is of the utmost importance. Stay connected to people & places that bring you joy. It’s a long journey so don’t walk it alone. I set healthy boundaries & enforce them when need be, but those who love you will comply. And the hell with the rest of them. I literally get in where I fit in. Now go see them great grands & make lasting memories 🙌🏾
thank you for the encouragement and I mostly try to do what I can that makes me happy. We had a huge family explosion earlier this year thanks to my husband writing one of the strangest and most offensive letters to my son. Seems they only want us when they need something and we put a stop to it. My energy is not great to get in the car and go visiting but that is exactly what I plan on doing soon....like me or not I need to see my family and great grands and do what I think is right.....besides my dear husband I am pretty much in this fight alone, even when i told them about the aggressive news.....my doc called yesterday though to say he was very pleased with my latest test results....anyway, back to being happy....like it or not here I come family!! (smile)
Indeed🙌🏾 I celebrated my Dad’s 90th Birthday today & its not until June 11th. Well I am having serious side effects with Zanubrutinib but still have some energy & I don’t know how things will be in 11 days🤷🏽♀️. I left my home @11a & didn’t return until 7p with 3hrs of driving but we had a blast & I am super exhausted now🥱
He got his favorite meal, I bought him a Red Velvet Cake & sat & ate in a beautiful park he found while I was driving him home. Such a beautiful day just he & I. I have to do what works for me & waiting on others doesn’t work well for me especially these days🤷🏽♀️
I can't help you with the reducing white cell count - I rather wish that for myself, but sadly mine is going the other way! However, I was struck by your comment that you were 'idling the time, Watching and Waiting'. My own approach has been to try to shut away the CLL stuff when I can, and do the best I can with whatever time is left to me. Of course it intrudes - typically every 3 months when I have to have a blood test and clinic - but otherwise I think it best to put it out of mind. Just remember that the 'watching' and 'waiting' is for the medics, not for us the patients!
Best wishes, and well done on your lower white cell count.
I’ve been watching and waiting for 14 years with many ups and downs, but nothing I would call serious. I just had my COVID Booster which once again caused cellulitis in the vaccined arm. Ended up in hospital on an antibiotic drip and with all my neck glands swollen and painful. I’ve never had any treatment for CLL per se but my body just seems to moderate itself. I often wonder if I really have CLL!
I'm sorry to hear of your "COVID Booster which once again caused cellulitis in the vaccined arm". Do you recall whether your skin was properly cleaned prior to the injection? (Well wiped with an alcohol swab, then give at least 30 seconds to dry.) You should not be getting cellulitis (a bacterial skin infection) from your booster, as the vaccine and the delivery should be a sterile procedure. CLL and even the precursor, Monoclonal B cell Lymphocytosis compromises our immune system, so we are more likely to have difficulty fighting off any bacteria pushed through our protective skin barrier.
Post-surgery infections may mainly be caused by skin bacteria - so why are skin wipes no longer standard procedure before vaccinations?
healthunlocked.com/cllsuppo...
The advice in the Australian and many other Immunisation Handbooks is not at all scientific "If the skin is visibly clean, there is no need to wipe it with an antiseptic (such as an alcohol wipe)." You can't see bacteria with the naked eye and bathing and showering with regular soap doesn't kill all skin bacteria.
From a 2001 CDC article Hygiene of the Skin: When Is Clean Too Clean?
Bathing or showering cleans the skin by mechanical removal of bacteria shed on corneocytes*. Bacterial counts are at least as high or higher after bathing or showering with a regular soap than before.
:
Alcohol-based formulations are superior to antiseptic detergents for rapid microbial killing on skin (66,67,70-72).
wwwnc.cdc.gov/eid/article/7...
*Corneocytes are the flattened skin cells which make up most of the epidermis - our protective outer skin layer.
Neil
My husband has CLL and on W/W, he has now yearly blood tests and calls from Haematology, he has been told that his readings have stabilised and he is in remission so it does, it seems, happen for which we are very grateful. He is now 84 and doing great, no one believes his age, and although he does get tired he is still active, plays competitive table tennis is a league, gardens etc., so just hoping that this continues. Good luck x
I go every six months to MD Anderson and at my last appointment Dr. Wierda told me that looking at how stable my blood is, I will probably never need treatment. After 13 years, my white count has gone from 19 to 22. My other labs remain perfectly normal. No lymph involvement and zero sickness/infection. Not sure what to call it but I know I am blessed and grateful.
How lucky you are! Enjoy your precious life, what a gift!
Mine has dropped into normal limits in the past on WBC but then jumps up and down. There are other numbers that show I still have the CLL/SLL.
In case my work life was so extremely physically demanding it really exasperated my Cll as I was perpetually sick from being around so many people is close proximity
In 2019 the white count was 34,000 and after a crazy round of two antibiotics to treat after-my GP did a fever work up it went down and stays 16 to 18000
All the CLL specialists ( including Dr Rai )NEVER looked into the route cause of my fevers/night sweats and other than a really horrible Covid slowly worked my way back to pretty healthy and active
I was told this disease has its ups and downs. I am three years in and only have the fatigue spells at times. Hubby just tells me I am getting old. I, like you, know my body and I am the one fighting for it. hang in there....this is a very sneaky disease and very complicated too....
Hello Artygolf
I think that is great. You are blessed. I had a nuclear stress test because the nuclear stress test technician was in last day of work before, they shut down that department, so they wanted to give him something to do for last day. Five months later after angiogram where my blood work was excellent, I was diagnosed with CLL and went from 10K to 197K+ in 14 months without any leveling off. It is what it is and I am happy for you. Blessings.
Artygolf, some would say you have good fortune. For me, I would say, thank you, God! "3"
Something similar is happening to me, my blood counts are now near normal after 15 years on watch and wait, and another CLL patient cared for by my oncologist has also seen his counts return to normal. I wondered: is it just the lab? or was he praying for us, or something? Whatever the reason, it seems like good news.
I'm happy for you! I'm not sure how careful we need to be now, but I assume we are not totally out of the woods and need to keep monitoring the situation. Best wishes!
Self-introduction
Venetoclax therapy- bloodshot eye
Inspirational 20-year CLL Survivor Terry Evans (CLL Society's Director of Support Groups) in CURE's August 27th Webinar Don't Miss It!
CLL Cure?
What does curing CLL mean?
