Hi all, I didn't feel well after partial thyroidectomy. Had some teats and was told I have cll. Was told just to watch and be retested every three months. I was tested for CBC and differential. From reading some of these posts, it looks like there is a genetic test available. I have my first appt. with a hematologist this week. I am wondering what other tests to ask for. Very interested in the green tea extract trials and would like to try. I feel better now. I also became slightly anemic after the surgery and am taking iron pills. Would really like to know the cause. The doctor doesn't seem to offer much except keep being retested and watch for symptoms.
Newly diagnosed with CLL and wondering what te... - CLL Support
Newly diagnosed with CLL and wondering what tests to request.
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montieth
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AussieNeilAdministrator
Hi Montieth and welcome to a community you didn't want to join, but will be glad that you have done so. I see from your profile that you aren't new to HealthUnlocked. (I was trying to work out where you live, because that strongly influences the answer about what tests are readily available to you.)
Broadly, in countries with universal health systems, prognostic tests are difficult to arrange, because they are used to determine what treatment will suit you best. Given a third of us never need treatment (and for someone in their 70s with 3 monthly check-ups scheduled, your chances are even better), plus test results can change over time, so you can understand the reasoning. The exception is the USA, where you can arrange lots of testing, with the cost determined by your health insurance.
The genetic test you should be able to get, is the FISH (Fluorescent In Situ Hybridisation) test for CLL. In order of desirability, the results are 13q del, "normal" karyotype, trisomy 12 and 11q del.
The test that will most inform you of your likely time to first treatment (and which is unlikely to change) is the IGHV mutation test, with mutated IGHV the desired result. TP53, NOTCH-1, ATM and B2M testing are also informative.
The LDH test can be added to your metabolic panel test as part of your regular blood testing. It provides an independent measure of your CLL tumour growth, which is otherwise assessed by calculating your lymphocyte doubling time and measuring changes in your node and spleen sizes.
Trends in your haemoglobin, platelets and neutrophils inform you of the degree of bone marrow infiltration.
Your susceptibility to infections is strongly influenced by your absolute neutrophil count (from your CBC differential) and your immunoglobulin (IgA, IgG and IgM) counts. Immunoglobulins change slowly, so only need to be checked every year or less often, depending on what the prognostic tests indicate. It's very important to get up to date with non-live vaccinations, as immunity generally only worsens over time with CLL. See
healthunlocked.com/cllsuppo...
The other fairly comprehensive post for the newly diagnosed in our pinned post section,
healthunlocked.com/cllsuppo...
is this one
healthunlocked.com/cllsuppo...
With respect to supplements, it's important to only have these if you have a confirmed deficiency verifyied by a blood test. Your GP/PCP can arrange a fasting blood test to check that you are absorbing enough iron, B12 and folate needed for red blood cell production. Anaemia when you have CLL, is typically caused by an enlarged spleen filtering out red blood cells before their use by date, bone marrow infiltration reducing production and/or autoimmune haemolytic anaemia. Still, it's important to check that diet and absorption difficulties aren't responsible, plus, particularly if you have low platelets, internal bleeding might be a cause.
With respect to the green tea EGCG extract trials, you've done well finding what I consider has the best evidence for a 'natural' way to hopefully slow progression. All treatments have potential side effects and the high dose of EGCG affected the liver in many of the trial participants (transaminitis). The trials were done over a decade ago at Mayo Clinic, using a pharmaceutical grade product Polyphenon-E supplied by Mitsui Norin, who stopped producing it during the trial. So we have no long term data and one of the principle researchers at Mayo Clinic, Dr Neil Kay, advised against buying EGCG, "because we don't know what's in it". Importantly, we now have far better treatments. (I took a good quality EGCG extract while in watch and wait, but found I could only tolerate half the recommended dose if I didn't want to poison my liver).
Neil
Thank you, Neil! It is very interesting what you said about different health systems degree of testing. I am in the U.S. and not sure that what I see as the excess of testing in the U.S. is very beneficial but I see that it can be frustrating to want the tests and not have them available. Will check out the sites you mentioned. I wonder if even the half dose of the EGCG was of benefit to your long term health?
The US health system is paradoxical in that you have access to the best medical treatments in the world, but life expectancy is sadly not commensurate with that. New treatments are regularly approved for CLL years before other countries. Yet you really do need to find out what's available to benefit from that treatment availability by finding suitable expertise (*see below). By joining our community, you'll learn about how to do that and add good quality years to your life expectancy. Since you live in the USA, you also have access to a free video consultation with a CLL specialist through CLL Society's incredible Expert Access Program. That can be invaluable if you can't find a recognised CLL specialist near where you live. See
cllsociety.wpengine.com/pro...
The CLL Society also maintains a list of recognised CLL specialists here: cllsociety.org/newly-diagno...
Prognostic testing is a double edged sword. Some of us would prefer not to know, as we might find out that we have poor prognostic markers. Importantly, they are only indicative for statistically large enough groups of people, not individuals, as CLL is so heterogeneous, even to a lesser extent within groups with the same markers. Irrespective, it makes sense to improve your health through better diet and exercise, etc, so that your body can best manage co-existence with a slow growing blood cancer and you'll be best prepared for treatment if it ever happens.
I started on EGCG soon after my diagnosis and had the SLL presentation back then, so I didn't see any obvious difference in my lymphocyte count. I found out 10 years later that I was IGHV mutated and had normal TP53, so maybe it helped me last until I could get access to targeted therapies on a clinical trial and maybe that would have been the case anyway.
You'll find you'll get much better advice from our community, if you maintain a bio of your CLL status and journey in your profile. This link enables you to edit it: healthunlocked.com/profile/... It saves responders time working out how best to support you.
*The CLL Society has been promoting Test Before Treat for several years now, following very worrying survey results on the degree of pre-treatment testing and the appropriate use of those test results. cllsociety.org/newly-diagno...
A couple of our US based volunteers subsequently shared their hard won knowledge of appropriate treatments, after being given a wrong first treatment.
Neil
I can add that here in Germany, they do a FISH test and a test for mutation automatically upon diagnosis whether one has statutory OR private insurance. This was incredibly helpful for me and I'm grateful for it, because it helped me figure out my life plans (I was 35 at the time and it changed the trajectory of my life because I decided to stay here rather than risk moving somewhere without good health coverage). I am mutated, 13q14/trisomy 12, and needed treatment after just three years. Fortunately I was able to access V+O and have now been MRD negative for a full year. My treatment was basically free (though we do pay for insurance here in Germany, it's scaled to your salary and maxes out at 800 euros/month; mine is less).
I think all of the tests are worthwhile.
I was advised strongly against EGCG both here and by my specialists because of the potential for it to have pesticides, etc. I imagine that a trial would be different though than just doing it on your own.
The EGCG trial used a pharmaceutical grade extract of EGCG - Polyphenon-E which Mitsui Norin,the Japanese producer withdrew from the market. Mitsui Norin repackaged the EGCG extract into a cream for genital warts and got FDA approval after a clinical trial. (I guess there's less risk of liver damage from a topical application 
)
Fascinating
I have read some of the articles and feel better. The only thing that was surprising and needs evaluating for me right now is all the supplements that I take to boost immunity. If I understand correctly taking probiotic supplements, mushroom extracts and others could be counterproductive.
IMMEDIATELY STOP taking any supplements that claim to boost your immunity. Where there is evidence for an immune boosting effect, it's almost inevitably due to experimental work showing that the supplement increased the lymphocyte count! My diagnosis came out of an investigation into why I had suddenly developed grade 4 neutropenia and infections became the bane of my life until I learned how to reduce my risk of exposure to infections. My specialist specifically warned me not to take supplements to boost my immunity, as they wouldn't work for me. I've looked into every claim made for supplement boosting treatments in CLL support forums I've come across over the last 13 years and my specialist has been proven correct. Prebiotic and probiotic science is in its infancy and I suspect that we'll need personalised medicine to really benefit. Increasing gut bacteria can be problematic if your neutrophil count drops into dangerous territory; you can get uncontrolled growth.
Mushroom extracts work by boosting lymphocyte counts, but also for some of us, we may have a CLL B Cell Receptor which is actually stimulated by the Beta Glucans in fungi cell walls. One member actually reported her ALC to take off suddenly after deciding to take a mushroom extract. She promptly needed to start treatment, much earlier than she anticipated (anecdotal but with some science behind it).
You'll find a fairly comprehensive summary of supplements suggested for CLL here:
healthunlocked.com/cllsuppo...
Neil
Also, the chitin in mushrooms is inflammatory. Not helpful in my opinion.
EGCG makes me dizzy and slightly nauseous once I get above 800MG daily., even though it did not appear to impact my liver on blood tests. Now I just take 200-400MG daily, and I'm fine.
Phase 1 of the trial established that the CLL tumour reduction, when it occurred, was proportional to the dose and settled on 4 grams per day. You aren't likely to see any benefit from a dose of 5 to 10% of the phase 2 clinical trial dose.
Neil
Neil, I figure that a low dose may not help much, but I did find one smallish study that suggests there may be a benefit: sciencedirect.com/science/a...
I have an appointment today where my hem/onc will be recommending I start treatment. I had the FISH and Flow Cytometry tests eighth years ago. Should I be expecting that they be performed again prior to deciding on a course of treatment? I also noticed that the last time my IgA/IgG/IgM were tested is 2014, is that unusual?
Thanks for that post. I discovered I was mistaken on what the results of some of the tests mean.
I'm not sure if it's advised, but I'm planning on telling my hem/onc that I want to transfer to a Mayo Clinic Hospital System (MCHS) today. My current hem/onc is a 90 minute drive and the MCHS hospital is three blocks from where I now live (I moved last year).
If your immunoglobulins were at very healthy levels in 2014 and you've had very few infections, then perhaps your current hem/onc considers they don't need repeating.
It's always wise to repeat prognostic tests prior to start treatment. It informs the decision on whether to try for a long remission with a fixed term treatment or monotherapy with a BTKi. You definitely would want IGHV and TP53 testing if you were imterested in FCR treatment.
Nril
Hmmm wonder if there is a connection between thyroid cancer and CLL. Was your T cancer treated with any radiation ? I had both and had RAI treatment for T cancer.
About the radiation treatment, I didn't have any. The nodule was benign but it was taken out because it was so large. I did start to feel unwell after the surgery though and was diagnosed with cll.
It is possible that the nodule WAS CLL. The thyroid can be one of the places that CLL goes in our systems. The tonsils are another possible placed that can have nodule that proves at biopsy to be CLL.
As for the thyroid situation, I have been without a thyroid since 1980--I had Grave's Disease which causes the opposite of low (hypo) thyroid. Hyperthyroid. There was no cancer found, and I was not diagnosed with CLL until 2001. Had 21 years of watch and wait--began treatment last September.
One thing i have learned over the years is to do the 4 hours between food, any meds, or supplements. I take the thyroid pill before bedtime to make the situation easy for myself.
Best wishes for getting your CLL profile. I suspect your Hematology introduction will be the appropriate testing that U.S. does. however, it is always good to go to Drs. appts. armed with knowledge, so you can have an idea about the Dr. you will see, by his/her procedures. There are admittedly some Hematologist who have not had a lot of CLL experience. That can make your contributions helpful, if the Dr. is one whose ego doesn't get in the way.
Let us know how things go.
ALSO: I have an Endocrinologist who checks my thyroid levels every 6 months.
Lol. The fact that the node was CLL was my exact thought since it wasn't thyroid cancer!
When I started Ibrutinib they said I was cured of thyroid cancer and changed blood checks to annually. Unfortunately, the Ibrutinib affected my thyroid pills and I became hypothyroid. It wasn't discovered for over a year and for the last two years they have been trying to adjust my thyroid meds. I am down to taking meds 4 days a week, due to hyperthyroid, with a blood test in a few weeks at which time the plan is to lower my dose and take it daily.
Taking thyroid meds has some timing needs. Check with your Dr. in regard to when you eat and when safely take the thyroid pill.--needs to be taken on an empty stomach with no food for 2 hours after.
There are foods you should not be eating. One is grapefruit (true for Ibrutinib also, so that should be easy.)
Walnuts
Red Wine
Cruciferous veggies (cauliflower, cabbage, Broccoli
Thee above can be eaten, but not within 2 hours (it may be 4 hours--ask your pharmacist) before or after taking the thyroid pill.
I have settled on taking the pill on an empty stomach at bedtime. That works for me.
If you take your Ibrutinib at bedtime, you need to ask the Dr. and maybe your pharmacist about when to take the thyroid pill.
Best wishes for getting your levels adjusted for good.
Thank you. I take my thyroid pill around 5 or 6 AM. I drink my coffee with a splash of almond milk 7 to 8, one hour after my pill. I take my Alacabrutinib around 930 AM. I intermittent fast so don't eat until 10-12 AM. I eat walnuts afternoon and cruciferous veggies at 5 at dinner. Crazy isn't it? lol I love grapefruit however don't eat it anymore.
Just wondering about the milk. The almond milk I buy is fortified with calcium so I have been avoiding it until four hours after my thyroid pill. But maybe the calcium in it isn't enough to interfere with the thyroid.
Yes, i forgot about milk and esp. because of the calcium. Since I changed to taking my Synthroid in evening, I haven't really thought about these items. (I've gotten lazy).
Somewhere along the line, I was told not enough calcium to effect it. My thyroid meds are too high. They are lowering the dose. I eat eggs however it's 4 hours after I take my pill. This week, I have another blood test to check it. Now I am taking thyroid pills 4 days a week 175 mcg. They plan to lower the dose so I take it daily. I could drink my coffee later, If my thyroid is too high I don't think it is affecting it unless calcium enhances the meds.
Welcome to our forum. I have nothing to add that hasn't already been said. The main thing which I keep in my mind is that CLL is unlikely to kill me, that I have every chance of living a normal lifespan. I just want covid out of the way so that we can resume a normal lifestyle.
I also had my thyroid removed due to thyroid cancer. I also had Cll at that time. Not sure which came first.
I am trying to understand the cll and thyroid nodule connection. Does the removal of the nodule then release abnormal blood cells into the blood stream? Does that mean it might be better to leave the nodule or tumor alone?
CLL/SLL nearly always originates in the bone marrow where it is the CLL expression (cancerous B cells easily detected in the blood). With the SLL expression (nodal presentation), it starts in a lymph node, which might happen to be near the thyroid. Given we have around 600 lymph nodes, the odds would be fairly small, particularly when you consider that most cases of CLL/SLL have the CLL expression. In that case, the only part of your body free of CLL is your corneas (no blood supply).
Neil
I found the tumor and went to my doctor who sent me to an Endocrinologist. I was told a large tumor and when I asked for him to remove it he said the surgery was too risky, and the procedure was to leave it alone. I didn't realize that I had to return annually so life went on until 7 years passed. It was brought to my attention that I needed to have it checked. There were two smaller ones that were benign. Then the next time I went one of the smaller ones was cancer. It took 6 months for the surgery appointment because it was slow growing and I could wait. It was those labs that showed elevated WBC, just at or a little over the cutoff. Later when I was diagnosed with Cll, I was told I had Cll at that time.
I might add when I was a child in the 50's I lived on Nellis AFB at the time of A-bomb testing in the desert. I remember my grade school teacher bringing us outside to watch one of the bombs going off in the distance, knowing we should be inside and maybe even under our desks. Although you couldn't feel anything except maybe the wind from the blast.
I stumbled on a website stating people who were exposed to the A-bomb testing could get thyroid cancer decades later. Interesting is that the same radioactive isotope I took for my radiation treatment was the same isotope used in the A-bomb.
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