hi all ,
I have been on the W and W program.
My blood dis-order was discovered in 2019.
I referred to it as a blood disorder as they still haven’t taken a bone marrow sample to confirm that it’s truly CLL.
I am curious if anyone in the group has tried removing any old root canals to see if it improved the chronic infection in the elevated blood numbers?
I was diag CLL without BMarrows.
I also have a number of root canals filled. Dental health is very important. i am fastidious about dentist attendance and dental care. Nevertheless root canals should not be allowed to inflame your bloods. The dental process to remove... I would suggest not without potential impact.
Other causes for inflamed bloods exist.
Jig
Jrugg -
A bone marrow biopsy is not necessary to confirm CLL. Fliw Cytometry on a blood sample can do it for people whose Lymphocyte count is above normal. If lymphocyte count is normal, Flow Cytometry on a swollen lymph node biopsy can confirm it, too. Only if lymph nodes are normal, lymphocyte count ate normal, and spleen is enlarged would they have a reason to do a bone marrow biopsy.
If you have a bacterial, fungal, or viral infection in your blood, that would be confirmed via a blood sample
For bacterial and fungal, they would do a blood culture. For viral, they would do a PCR. Then they would try to treat the infection with IV antibiotics, antifungals, or an antiviral, if one exists.
What testing have you had, and what did they diagnose?
=seymour=
Hi Seymour, thank you for the explanation.
I have had the flow test only and my neck nodes are swollen and my lymphocytes are 74%.
Did the flow test say you have CLL/SLL?
=seymour=
Maybe it wasn’t a flow test. It was blood smear test. Not sure if that is the same thing?
The oncologist have said it’s most likely CLL , but have not done a bone marrow test to confirm.
Unfortunately since Covid, I have been very skeptical of our medical system and the pharma industry.
From my personal experience, if your root canal is infected (as seen on an X-ray), they will try to clean it, clear it, and inject medicine into the root canal. It is a long process (for me, it took over a year) and requires many follow-up visits to ensure the infection is cleared. Eventually, you might need to remove the infected tooth and get an implant instead. It is costly. I hope you don’t need any of this expensive dental work. My specialist wasn’t concerned about the infection affecting my blood work.
Thank you for the reply.
I have my doubts that’s what caused my wbc count to rise . But there has been cases where teeth have caused many serious problems
I also had 2 old root canals become inflamed/infected. They did the process you describe but after many appointments and much pain, they could not be saved. Dental extractions, bone grafts were needed (due to bone/age erosion). Then I had to make the decision for dental implants with crowns because - with 2 missing molars on the same side of my mouth - I could only chew on one side. It was a 2 year - very costly process - even with (lame) dental insurance. I am only 62 so I wanted to be able to enjoy chewing and be able to eat salads, and raw fruits and vegetables for the rest of my days! There is one "lesser problem" crown replacement to be attended to when my insurance benefit renews in January 2025. I have vowed that if anything major happens after that one crown is replaced - I will only eat oatmeal - I can't afford this to go on and on. 😂We CLL/SLLers cannot have ongoing infection any place in our bodies so dental health must be addressed. Best to you.
I am supposed to start treatment soon. Up to now I was on watch and wait. I planned on getting dental implants prior to treatment. I would think that dental work is not a good idea whike on treatment, or is this not the case?
Of course consult with your oncologist but in general - it's best to get invasive dental work done before you are on treatment. And if you are on treatment and need dental work - depending upon your treatment type (oral vs. infusion, etc.) - you may need to pause treatment for any dental procedures. I was able to time my various dental "adventures" while not on active treatment. With dental implants, there are multiple stages from extraction of the bad tooth, and a bone graft (if needed), which can be done at the time of extraction. Then it heals for 3-4 months before the impression for the crown can be made. The crown stage is less invasive - although some tissue may need to be cleared away once the implant heals - and before the crown impression is made. I take prophylactic antiobiotics prior to any invasive dental procedures (including cleaning) as I have a hip replacement, as well as CLL/SLL. Best of luck to you!
Hello jrugg , This guy had CLL (in 2009) and had removed his mercury amalgams.
Very interesting CLL story : clldefeated.info
He obvious had very slow growing CLL, so it's highly likely had mutated IGHV. ".. so when my blood test of February 2, 2009 showed that my WBC (White Blood Count) had come back into the normal range for the first time since I had been diagnosed with CLL eight years ago.. " Keep in mind that nearly all spontaneous remissions (with a chance of around 1 in 50), happen in those with mutated IGHV. He doesn't appear to have shared his prognostic markers, which were very difficult to get done in Australia in 2009, let alone back at the turn of the century.
Neil
Hi Neil, II is interesting to know 1/50 is in spontaneous remission !
Where can we find this study ?
Thanks in advance
Phiphi
Given the incidence of spontaneous CLL remission/regression is reported to be around 1%, with nearly all reported cases being in those who are IGHV mutated and the ratio of mutated to unmutated IGHV at diagnosis being around 1:1, the spontaneous remission rate for those who are IGHV mutated is around 2 X 1% or 1 in 50.
See for example Spontaneous regression in chronic lymphocytic leukaemia. Clinical features of 50 cases from the ERIC registry and review of the literature
onlinelibrary.wiley.com/doi...
In over 15 years of reading CLL patient experiences on a number of international forums, it's been my observation that those who credit their special diet, supplements etc., for their long period in watch and weight or regression, where they disclose them, pretty well invariably have very good to excellent prognostic markers, just as was reported in this review (see below). Interestingly, I've also observed that those who make the strongest claims that whatever they were taking, doing etc., was responsible for their regression, almost invariably are reluctant to share their prognostic markers and also tend to share very little information about trends in their absolute lymphocyte, haemoglobin and platelet counts.
The prognostic markers from the above paper, with my emphasis "..most patients had normal levels of beta-2 microglobulin (23/30, 77%) and lactate dehydrogenase (LDH) (30/31, 97%), and a CD38 expression below 30% (32/36, 89%), CD49d below 30% (16/20, 80%) and ZAP70 below 20% (18/24, 75%) (Table 1, Tables S1 and S2). Fluorescence in situ hybridization (FISH) analysis, fully available in 40 patients, confirmed the low risk: 17 had no FISH lesions (42.5%), 15 had del(13q) (37.5%), six trisomy 12 (15%), one del(11q) and one del(17p) (in 30% of the cells). Sanger sequencing of the TP53 gene was performed in 16 patients and all were wild-type (WT). The immunoglobulin heavy chain variable region (IGHV) genes were sequenced in 36 patients, resulting mutated in 34/36 (94.4%), as expected."
That's why the only way we can determine whether cases of regression are due to something people did, or whether it would have happened anyway, is to randomly assign people to different arms, with one control arm and other arms assigned to different interventions - then see if there is any statistical difference between the arms.
Neil
Thank you for sharing this , I will read up on it
Did you have a flow cytometry test? CLL isn't an infection. It's a lymphoma. A form of blood cancer
Honestly not sure if had the flow test. I went to a hematologist and they did smear testing. That has been 5 yrs ago so I don’t really remember that well.
I guess out of hope and desperation I was just reaching for the idea that maybe a blood infection could cause the wbc /lymphatic problems.
Deep down, I don’t believe it is from my teeth, as my blood work changed with in 4 months of receiving a long list of vaccines for pre deployment. There is nothing I can do to change that which is disturbing. I would much rather find a repairable issue.
What have your blood tests shown in the last 5 years? Has there been a continued increase in your absolute white cell count & are you now having other symptoms?
I was diagnosed in 2016 and didn’t have a bone marrow biopsy until I was due to start treatment with FCR in 2018. It was repeated at the end of the 6 cycles. When I relapsed in 2021 it was decided a biopsy wasn’t necessary as the ct scan confirmed the need for treatment and I remain on Calquence.
As regards dental work I had a dental implant for a front tooth prior to starting my first treatment with no issues.
My dentist identified infection due to a failed root canal on a different tooth from an X-ray in 2022. It did not affect my blood results and I only had occasional discomfort from it, although it was sensitive to cold. It was decided to have the tooth removed as the root canal pretreatment was not certain to work and the position of the affected tooth was not visible when talking etc. It was decided to have the procedure in a hospital setting rather than dental surgery due to my ongoing treatment and the condition of the tooth. The tooth was removed in October 2023 and has subsequently healed and the infection and sensitivity has been resolved.
Hello Jrugg
My first hematologist explained to me after I had bone marrow biopsy, (BMB), that it was not needed, that blood test is normally sufficient. BMB are however done in some cases requiring additional analysis.
I had root canal removed after first diagnosed with CLL to see if it would affect my rapid rise in WBC, it did not have any effect. Blessings.
Removed mine roughly three months after dx under the theory of leaving "no stone unturned". Can't say I noticed any causal WBC/lymph decrease. That said, my CLL has been behaving rather indolently since the beginning.
Beta 2 Microglobulin
new to group 
teardrop cells?
How long have I got DR>>>?
