Had my first visit to the Hematologist . He was patient, he was kind , he was very informative and most important to me , he asked me what my questions and concerns were. Unlike a lot of doctors I worked with as a nurse , ( who MANY have seemed to have lost their Sensitivity chip ) , he was full of compassion and Truly listen to my questions, to my fears.
I live in California where AB 2098 is forcing the silencing of Doctors . Since my CLL Dx in Feb 2023 , I have asked my GP , my Oncologist , and last week I asked the Hematologist, HOW I can keep myself healthy and most importantly INFECTION FREE. ( I spent the morning reading New-bee-cell 's post and everyone's feedback. ) That is my same question and concern. Yes I do keep in mind the Heterogeneous effect of CLL . As a nurse we followed Parameters when dealing with fevers and did not always treat right away. I asked the hematologist about fevers , he was adamant ! , First sign of fever I am to be put on Antibiotics , I can't wait for my body to do its job ?? NO ! NOT WITH CLL , he said. OK, Did not expect that. He wanted to write me out a prescription for antibiotics but I said I would hold off. After reading everyones feed back I can see that was a mistake. I explained I wanted a FISH test, he order for me a CLL prognostic panel to be done next week.
As a Nurse , because of the Risks ; Benefit ratio , which was NOT crystal clear in the beginning , I did not get ANY Covid shots. After going to an indoor Aquarium in April of 2022 , I came down with Covid. With a long history of Asthma , I struggled to breath at times , BUT was always able to improve my breathing with Albutoral and a Nebulizer machine. ( also had 2 Zpaks) It took me about a 50 to 60 days to feel back to normal. Back to the hematologist, when I asked about vaccines I explained I received the Prevnar 20 in March. He suggested that I get the shingles , which I had been sitting on the fence about. Next question, what about Covid shots ??? His reply was the same as my GP and Oncologist, He did not suggest it. His words were "Not with CLL " As the person 70-80s overlander commented the information and application has shifted. As said , each person has to make his or her decision. I very much value this site and I am NOT trying to be controversial. Needless to say there are different treatments , applications and opinions around the world when treating CLL , and of course things are always changing and improving. I have had hot flashes since 2014 , started HRT in 2019 , ( at which time my WBC's were WNL). When I explained the heat was getting worse, he explained that Yes, this could be part of CLL . He also explained that I should try to avoid treatment as long as possible , due to the side effects , as we know some can be life changing and life threatening . Will be taking lots of cold showers and drinking a lot of ice water, AND being extremely thankful for having a cancer that is treatable . Thank you to everyone that shares their experiences and feedback , this is how we all learn. Its a beautiful day and there are NO fires in my back yard. Life is Good.
Written by
Sillysand
To view profiles and participate in discussions please or .
Hi Seeker. Great to see you're looking after yourself. You seem to have a great positivity. Thank you for the reminder to protect ourselves, even on w & w. I must admit, I sometimes get lax: leave my mask off in a busy store, work in the garden without gloves, though I do have all my boosters up to date. I think to myself, 'I'm not too bad.' But we just never know, do we? Take care!
I am dying to know what your bloodwork looks like??? I got Covid April 2021, I refused the vaccine & my doctor did not want to see me for 90 days. He said just rest, get on your feet but no bloodwork or Chest Xray until 90 days. Okay but I had an Onc appt in 60 days & he was so right, my bloodwork looked like I was stage 1 CLL pt. But my numbers all went crazy after that & I hit stage 4 Oct 2022 when WBC went from 49-89, platelets dropped to 80/90 & Hgb was still good 11 but that started dropping to 9.8 when I decided to start treatment. I started with Zanubrutinib full dose & after 13 days hospitalized with Chest pain, that was Pleurisy. They ignored it & 2 days later Left Pleural Effusion & my Lungs did collapse. Now on Acalabrutinib 1/2 dose & no exercising since that precipitated that last event. 3 weeks plus now & not happy with CLL numbers but LDH 327->227 & Alk Phos 149->109. I was told to be patient & up it to full dose. I see a real Onc on June 19 & I will wait & see what she thinks.
In 2019 my WBC were 8.8 , 2020 =10.6 , 2021 =13.4 , 2022 =12.4 AND 2/2023 =15.9. Lymphocytes were 2019 46.3 , #4.1, 2020 %=50.2, #=5.3, 2021 %=51.4 #=6.9 ,2022=51.5 #=6.4 //. My IgA was 58 , I'm was 46 , My IGg was normal 801 , Gamma G. was 0.7. All else was WNL
In march 2023 oncologist said I was in stage 0. Other than Nonstop hot flashes, I had no other symptoms. I received a Leukemia/Lymp. in Jan and a flow cytometry in Feb. The oncologist would not, could not decipher these test for me, and after reading so many post were folks either have a specialist or encourage one, I spoke up and was referred to a hematologist. If I read correctly you have had CLL for 14 years ? I realize I am very fortunate , but I do expect lab work to change. I have often wondered what determines treatment. Then I have to keep in mind Neils post where 30 % ??? never need treatment. Of course each person's CLL is different. Reading your info, story, my question is why your numbers "all went crazy" ? And I am thinking the answer is THIS IS THE CLL JOURNEY. One never know what's going to happen. You sound pretty darn diligent about taking care of yourself with regular exercise, your retired and most likely limiting your exposer . So my thought is why did your numbers change ? and what was the time frame of going from a state 1 to a stage 4 ?? Is this your very first CLL treatment ?? I realize I am just starting this battle , OK journey , but realize it would be best NOT to become laxed and or complacent ( you too Guffy). Eating healthier , dropping some weight , swimming and or walking , getting a shingles shot, wearing a N95 when cleaning out cat boxes , finding a water filter that eliminates bacteria and viruses , wearing gloves in the yard, AND trying my best not to get bitten by a black widow or a rattle snake , ( AND of course washing my hands ALOT , are the ways I am keeping myself as healthy as possible. With having CLL for 14 years , is it time to find a CLL person ? I am thinking of a post that stated , people who had a specialist live longer . As a former nurse , I am sure you have experienced our often over worked and often broken system. If anything has been my take away with this diagnoses is that I better start being that squeaky wheel while I still can.
Feel better soon, keep your chin up, 2 Timothy 1:7. Will be following your treatment. Take care.
Yes I was so certain that I’d be in that number of 30% not needing treatment. But what I am surmising is that with the average age of 70 means that many die from old age & they don’t need treatment. But the younger you are at diagnosis the worst are your chances for needing treatment. However going 13yrs 8 mos with no treatment except for losing 90lbs, going plantbased, RAW & Juicing. I may need less treatment so that’s why I am on Acalabrutinib 1/2 dose, 100mg every 24hrs.
My stage zero was picked up on a basic CBC lab test & I was told to follow up but I never did & actually forgot about since I was a busy single Mom of 3 & working a stressful ICU job.
It was not until 2008/9 when I became extremely fatigued that I could not shake. But I did not explore it until a giant lymph node poked out my neck July 2009. It was biopsied in August & got results in Sept 2009. Started seeing an Oncologist affiliated with Robert Wood Johnson University Hospital. Probably stage 1 then, just every 3mos appt with tons of blood taken. I pushed it to every 6 months because it was depressing in there.
My WBC stayed at 20 for 10yrs, 2009-2019. 2020 I started feeling Left Lateral Pain every morning. I pushed for a PET Scan & it only showed Diverticulosis. I did everything I knew for it but it was hit & miss. By 2021 my WBC jumped up to 35 & more intestinal issues & fatigue. I pushed & got an Ultrasound & it showed more lymph growth in my Abdomen & a Spleen that went from 10-14 & my Oncologist said ‘that’s not bad’. I switched to the new Onc with my CT Scan results of Sept 2022 & it showed massive lymph nodes that looked like multiple water ballons. That’s when I went 100% Plantbased, RAW & Juicing & the intestinal inflammation/blockage decreased🙏🏾
I had 2 bad Sinus Infection even tho I was masked but the people around me were not. My WBC hit 49 & by Oct 2022 WBC 89 & all the other symptoms put me into stage 4. But mind you, no one told me but that is why I switched the Onc practice to one with a patient portal. I was having bad night sweats, fatigued, on & off stomach upsets. But with the diet change I still had energy to teach my Low Impact Exercise Classes 2X per week. I was able to eat good food & drink my 1 gal of water daily plus Supplements. I am a Natural Gurl because I don’t do well on Western Medicine.
I hate that I can not workout. I did 30min Dance on my Vibration Plate & now today my right chest hurts but no pain with breathing. Now I don’t think I will increase this to full dose since ER visits is not a good option🤦🏽♀️
Your Bio says a Feb 2024 CLL diag, I guess you mean 2023! 😉
I had to Google AB 2098 being a UK island dweller! Gosh!
Your post holds much well expressed CLL reality. Its a journey, and idiosyncratic as well as heterogeneous. Fluid too! Complex sure! It's like we all have unique experiences, many shared too of course.
Psychological well being in time the major challenge.
We need excellent, trusted, competent and accessible CLL Dr's. With them watching our backs we can live good lives.
The management of infection is most important, that includes infection protection. I have ceased shaking hands, and touching faces with my lips! Hugs are out too. And it makes me feel socially outcast, when everyone else is doing it.
Blind antibiotic treatment of infection is tricky, one really must try to ID infection cause. Different infections demand different antibiotics and routes of administration. I know you know that! Not all readers will tho... staphylococcal and streptococcal infection can be diagnosed by eye, some fevers need blood cultures, urine and chest xray investigations.
My wife probably my biggest potential infection source, she still hugs!
It's hard, and sharing helps. I thank you for your post.
Hi Jig. I have just copied out your fifth paragraph, just in case someone asks why I am looking for a new consultant. Perfect words. Thanks, and take care. Interestingly I have found myself recently refusing handshakes. That was normal in Covid, but something seems to be instilled in me!
Yes it was this year I was diagnosed. I do realize we all have to be diligent to keep from getting an infection, some of us more so than others. (16 pints removed ??). Being in stage O with WBC at 15.9 , was thinking (hoping ) I didn't need to be as careful as say you or Coachvera55 , or a number of other folks. Every year I take a senior special needs man to the gym to swim, plus a few trip up in the Sierra Nevada's to hike and swim in the lakes. Now I am wondering if I need to rethink the whole swimming thing. I read a post somewhere about swimming but can't seem to find it now . In regards to antibiotics, Yes as a nurse or a patient, I always want to R/O , rule out why and where the the infection is. You brought up a good point and something to always keep in mind, " some fevers need blood cultures, urine and chest X-rays ". You are in the UK, here is California , Politics (my opinion AND experience ) have not only interfered but have altered patient care. I have been fortunate My GP , Oncologist and now my Hematologist have been open and I feel honest with me , but they have to be very careful in their wording. I am just so grateful my CLL was diagnosed after the major pandemic .
Lastly, your comment "Psychological well being in time is the major challenge " I sat staring at that for a long time , I'm just starting down this road , and to think one day All hell could break loose,, In so many ways,, Its a very dark thought . My next thought needs to be what your next sentence states and what Neil and many other folks emphasize, get a good team together while you can .
Thank your for your feed back . Yes very much = sharing helps. God Bless Seeker
Well I am on watch and wait, and on my seventh Covid vaccination. When I finally caught Covid this year I was pleased it was quite a mild illness. Let's all hope that more severe versions of Covid don't come round. A relative of mine works as a chaplain and saw a lot of the unvaccinated in ICU in 2021.
As a 54-year old woman not yet in menopause (why??? I can't understand why not, it's driving me a bit crazy) I'm just chiming in to say I bought a crazy device on Amazon that has been surprisingly helpful. It's a USB-chargeable fan that you wear around your neck, looks alot like a pair of headphones. Cost about $30 and it really helps.
I do use fans. But fans can not stop the nausea that comes from the intense heat . People think No big deal, drink some water, get a fan, stop thinking about it. When you eventually get into menopause and if you get HF's bad enough you will know what I mean. 9 + years dealing with them and now with CLL they are turning into night time total sweats. Its exhausting and debilitating . Unless you experience them yourself , you won't understand.
Great write up from nurse's perspective. The covid shot was nothing more than a band-aid for those with CLL. I discussed getting covid vaccine with my CLL Specialist. He said only about 30% of CLL patients get any benefit from shot and 50% of the doctors at his university hospital would not take shot, I suspect because covid vaccines were not vetted. Their logic I can understand as I don't have much faith in vaccine that requires booster every 6-8 months. What irritates me is that my wife worked for months with covid patients and even doing covid triage at hospital door, due to shut down of her clinic for covid patients that never materialized, she took covid shot months later rather than be fired. On the other hand, I have watched several CLL Society webinars which advocated for CLL patients getting covid shots but did they stated that covid shots were better than nothing, for people with CLL, I agree. For general population, I disagree, should be personal choice. We do not need a scientific study to determine that thousands of people have had covid shots and still contacted covid. Blessings.
Hello Seeker, I too am a nurse, retired now, with 18 years of dealing with CLL. And I live in Socal. Have had numerous treatments. They are getting better. Started out in clinical trials. Now on Zanubrutinib and Rituxin. Was on Ibrutinib about 6 years ago. One thing I've learned is that everyone is different and we all respond a little differently. Many side affects, but able to deal with them with all the meds. Ideally you would have to live in a bubble, but we all know that's not reality, but sometimes it feels like that. I get all the vaccines possible and then some. Some years, had to get the flu shot twice. I wear a mask everywhere I go. I don't eat out inside restaurants. I might sit on a patio. So far I have avoided Covid, with all 6 doses. I have asthma too, had pneumonia once and don't want to go there again. I live alone now and I stay healthy because my animals depend on me and they keep me sane. I stay busy and there are friends I see, just no more big parties. But I'm ok with that. You will have to find your safe spot and just take one day at a time. I have always had my local oncologist, and then I travel to see a CLL specialist. Keeps things in balance. Good luck to you and read up on everything CLL. Knowledge is power.
There are soooo many varying opinions when it comes to CLL and also to Covid vaccines etc, it's really impossible to know who's right or wrong, so I think for your own mental health, do what's best for you. I see a CLL specialist here in Australia who is widely considered one of the best in the world in regard to CLL, he has written many papers and presides over all of the CLL trials at The Alfred in Melbourne, he has always recommended the covid vaccine to me, I am in treatment currently (Obinutuzumab/Venetoclax) and he sees no reason for me not to travel overseas next year when my treatment is completed - obviously I would be taking precautions like masking well during travel/busy places and trying to eat outside or in very well ventilated spaces. My only real fear is I know in Australia I won't get travel insurance for CLL, so my plan is to visit places with reciprocal health with Australia so if I did land in a hospital I would have some cover, listening to the way others approach this illness in terms of limiting their exposure to illness really scares me in regard to quality of life and freedoms, I am only 57 so want to really live my life while I still can. I am unmutated, so realise this won't be my last treatment, but I'm determined to live the good years in between treatments. I want my partner to be able to live these years well also, we both have aging parents so we know that you can't do these things much later in life, the 50s and 60s are really important years to live your best life. We are not wealthy, we save money to do what we want within reason and we don't have a fancy home, we'd rather life experiences.
I guess everyone is so different in their approach.
Just wanted to share my experiences & comment on Shingrex vaccination . I am also a retired nurse. I once took care of a leukemia patient for 3 weeks. He had whole body red raised sores. He was on a morphine drip and laid under a tent we put on his bed to keep sheets from touching him. I will never forget him, what I saw, what he said, or how helpless I felt being unable to do more for him.I am unable to get the vaccine. I am allergic to it. As you can guess, I am in absolute terror of this happening to me. I pray anyone who is able to will get the vaccine.
I'm coming up a year since shingles sneaked into my right sciatic nerve. The rash down my leg took nearly 2 weeks to appear, so I missed out on trying to prevent long term damage with an antiviral. I have never been so ill in my life as I have with shingles. It affects so many aspects of life quality and unfortunately pain medications don't necessarily work, plus they can come with their own significant challenges side effect wise. I'm still on nearly the maximum dose of pregabalin or intense stabbing pains return. My gait is now nearly normal - provided I'm not tired or the pregabalin hasn't started to wear off.
If at all possible, anyone over 60 should have the shingrix vaccine and booster. Any discomfort - even those that some have reported lasting a few days to a week are inconsequential compared to living with post herpetic neuralgia, which happens about 20% of the time.
Thank you for sharing your experience, Neil. Perhaps, together, we can convince others to do everything they can to prevent such suffering. I'm truly sorry you suffer such pain. You're such a blessing to this site. Please keep up the good work you do. It is greatly appreciated on so many levels. God bless you.
Dr Wierda's "belt and braces" approach makes perfect sense, given we don't respond well to vaccines with respect to antibody production. I had held off getting vaccinated against shingles, because I had undetectable B lymphocyte counts after treatment. I might have been able to stay on valaciclovir (Valtrex) after finishing CLL treatment, but I was having occasional suuden onset diarrhoea, which is listed as a less common side effect of valaciclovir, so my specialist agreed that my lymphocyte count (T cells) had lifted sufficiently after treatment for me to stop taking the antiviral. In retrospect, it seems a lingering side effect of taking venetoclax or acalabrutinib was the cause.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
starting W&W
Pneumonia booster necessary or not?
Starting my diagnostic journey
CLL W+W related(?) back/ leg pain
