Has anyone heard of the Hepatitis C medication Harvoni causing CLL? I was treated with it in 2015. I have CBC tests from 2014 and 2015 showing normal lymphocytes. The first elevated CBC panel I can find is 2016. I see my numbers still elevated in 2018. I was diagnosed in 2021. When I was I was told the Harvoni could have causes it. Which is interesting because it looks almost immediate, like a year, if true. Looking at previous labs my lymphocyte count increased only about 30% from 2016-21 but had no readings in the normal range during that time period.
Harvoni and CLL: Has anyone heard of the... - CLL Support
Harvoni and CLL
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Rando21
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lankisterguyVolunteer
Hi Rando21,
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It seems like you are searching for a possible "cause" of your CLL. Here are some links that may help with your search:
lls.org/leukemia/chronic-ly...
SNIP Risk Factors
Doctors don't know why some cells become leukemic cells and others don't. For most people who have chronic lymphocytic leukemia (CLL), there are no obvious reasons why they developed the disease.
CLL has generally not been associated with any environmental or external risk factors with an exception of Agent Organge (see "A Risk for Vietnam Veterans," below).
Some studies also suggest that exposure to benzene in the workplace increases the risk of CLL; however, the evidence is not as strong for CLL as with other blood cancers.
There are no known ways to prevent CLL.
You can't catch CLL from someone else.
Experts have found that in a small number of cases, first-degree relatives (parents and siblings) of people with CLL are approximately four times more likely to develop CLL than people who don't have first-degree relatives with the disease. However, the risk is still small.
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cancer.org/cancer/chronic-l...
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Len
Interesting. Thank you for the information. I have heard the radioactive materials, toluene, and pesticides can also contribute. Maybe that’s not true.
A higher incidence of CLL has been reported in populations exposed to radiation from Chernobyl, but not from earlier nuclear radiation exposures. There is a class action settlement from Roundup exposure, but it's important to differentiate jury based awards vs evidence from epidemiological studies.
Neil
Good points. Do you think I should see it as odd to have developed CLL at 36? I think I actually could demonstrate that I had it as early as 32. To my understanding its very rare. I sought a second opinion after my diagnosis and that doctor told me that if I had been exposed to something it would have been at least 10-15 years prior to diagnosis. He also stated he felt confident I had CLL for several years prior to diagnosis from previous CBC panels.
Per the USA SEER data: seer.cancer.gov/statfacts/h... 0.3% of diagnoses occur in those under 34, 1.5% between the ages of 35 to 44 and 8.3% between 4 and 54. So yes, to be diagnosed at your age is rare, but we do have other members diagnosed younger than you. The earliest age of diagnosis I can recall was 18. Also, many of us can find evidence of our CLL being present years before our eventual diagnosis. That's to be expected with a chronic/slow growing (indolent) condition.
Don't forget that about 10% of CLL is familial. The median age for a Familial CLL diagnosis is about 60, or 10 years younger.
clltopics.org/DC/WorstDay.html
Neil
That’s interesting. My paternal great grandfather had it and in the process of investigating I found that my paternal great great grand mother on the other side of my dads tree also had it. I was told by genetic counselors that I did not have a hereditary marker. Interestingly all of those family members lived in a similar and close geographic area. The predominate industry was agriculture. I also grew up partially in this area. Since there’s no genetic markers and 3 individual loosely related with the condition I do wonder if there’s a common link in some kind of environmental exposure. Again, it could be coincidence or an as yet undiscovered genetic link. Just seem improbable 3 persons in a family line would get it. Especially two that were not blood related. I dunno sorta found that interesting.
Just to clarify my dads mom’s dad and my dads moms moms mom. I know thats kinda confusing. They all lived within 40 miles of each other in an area that is basically Agg and ranching. I dunno… Just another part of the as yet unsolvable mystery.
Seriously, I would be suspicious of that statement by the genetic counsellors unless I've missed an update since this 2010 paper:
pubmed.ncbi.nlm.nih.gov/203...
Families with multiple individuals affected with chronic lymphocytic leukemia (CLL) and other related B-cell tumors have been described in the literature and strong familial aggregation has been seen in population studies. However, predisposing germline mutations have not been identified.
Perhaps your forebears don't have an Askenazi Jew background, where there is a recognised higher incidence of CLL. That may have been all that what was considered.
Neil
Very interesting. Do you know how I could submit my family history and genetics to a researcher? It could be useful.
I was suspicious of the generic tests myself. It was done professionally at the Cancer Center which is nationally ranked but it still seems hard to believe. To my knowledge my family does not have any jewish heritage to my knowledge. Mostly Scottish, english, norwegian, and native. None of which included jewish heritage to my knowledge.
The US National Institutes of Health have been doing a CLL familial study: dceg.cancer.gov/research/cl...
That is interesting, thank you for your informative contributions as always. I have yet to understand the 'evidence of CLL before diagnosis' part. Do you mean evidence in terms of symptoms? I was diagnosed just under a year ago and my bloods have been normal for decades, until I had Covid. The high levels of WBC and Lymphocites that remained after Covid led to my CLL diagnosis. When I asked about this my CLL specialist said that I would have had CLL in my blood 'long before it would show on blood tests'.
Some of us are aware of symptoms before our diagnosis, but it can also be the case that our lymphocyte count or other blood tests begin to shift from their long term baselines, which isn't recognised until in retrospect. Monoclonal B Lymphocytosis is the precursor to CLL and less often SLL, but platelets, red blood cells/haemoglobin can also show downward trends.
Neil
There's a lymphocyte to other cells ratio where even though actual numbers are considered "normal", the portions being off is indicative of a potential early disease process. Ot's somewhat analogous to how doctors nowadays look at certain lipid types and their ratios in our blood when assessing imbalance i dicating risk for cardiovascular disease. Decades ago, it was thought only "total cholesterol" was important, and as time when on it was discovered that the subcomponent ratios are more important than the overall number.
The ratio isn't specific to cancer, it's a general indication of disease. So going back & looking at earlier tests, one can say "there was something going on starting at X time".
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/341...
Since I had a broken leg, then a series of infections, my abnormal ratio didn't set off alarm bells. So I never had a diagnostic workup whenI was asymptomatic. Who even knows if the ratio abnormality *was* due to the CLL, since infections & other causes of inflammation can skew things.
cllady01Former Volunteer
If you had fatigue and changes to your hemoglobin while on Harvoni, those are two things that can be experienced with CLL---but, otherwise, no probable connection has been made with any substance except Agent Orange and benzene.
Also, Harvoni can have an immuno-suppressive effect, as does CLL--but that does not mean there is a cause in relation to CLL.
Who told you Harvoni could cause CLL? If it was a hematologist/CLL specialist, could the reference have been to the hemogloblin (red blood cell factor) and/or any fatigue you experienced or are experiencing? Or, could the immuno-suppression factor of Havoni been spoken of as what both CLL and taking Harvoni share in the symptom area, rather than one causing the other?
drugs.com/sfx/harvoni-side-...
It was a member of the medical team at the cancer center I use. They mentioned another patient around my age who also had developed CLL after harvoni treatment. Specifically it was stated that it seems possible harvoni could cause CLL not just a suppression. I have had doubts about this statement but looking at my CBC panels it is odd that my lymphocytes spiked right after treatment and never went back into normal range. I dunno. Any input is appreciated.
All very interesting, Rando21. I was treated with Harvoni in 2015 and WBC began climbing in 2018, diagnosed with CLL in 2020. My aunt died with CLL 30 years ago. (The treatments were not what is offered today.) I'm not really looking into the WHY I've got CLL. I look towards living well with this diagnosis. But, you have definitely peaked my interest. I appreciate you bringing it up. Thank you for your thinking about this. Sandra🙂
Hepatitis C itself might increase the risk of having a blood cancer:
news.cancerconnect.com/non-...
"Several researchers have reported a relationship between Hepatitis C virus (HCV) infection and the risk of developing non-Hodgkin’s lymphoma (NHL) and multiple myeloma."
pubmed.ncbi.nlm.nih.gov/225...
"We found a higher frequency of HCV infection in patients with CLD and especially in CLL patients"
en.wikipedia.org/wiki/Chron...
"exposure to hepatitis C virus may increase the risk"
Harvoni causing CLL ? I wonder if some other CLL patients had been effected in similar way. I had been diagnosed with CLL after I had some dental implants with cow bones. I am still wondering if the cow bone had triggered my CLL, even though all the experters I had consulted ruled it out. Enclosed is a synapsis of my CLL journey.
yy mm dd WBC
2012 ~5 8.3
2013 ~5 9.7
2013 10 28 cow bone graft
2014 5 8 19.5
2014 5 22 11.1
2014 8 30 11.7
2014 12 11 14.9 diagnosed CLL
2015 3 24 13.5
2015 7 11 13.5
2015 12 14 15.8
2021 5 17 347.5 start Imbruvica 420mg
Anyway, I wish you the very best, as CLL has become more curable with the continuous medical advances achieved by the wonderful researchers.
Thanks for your input. It does seem to have a bit of a jump after. I have not seen research on that type of issue.
There are a couple of major issues with your tendered evidence supporting your proposed theory that your dental inplants may have caused your CLL;
1) Your WBC is made up of 5 different white blood cell types (6 if you count segs, or immature neutrophils). We don't know which component(s) of your WBC increased in October 2013, when you had your cow bone graft. The fact that your WBC subsequently decreased, strongly indicates that the increase in late 2013, through to 2014, was due to a natural response to inflammation/infection, most likely due an increase in neutrophils and maybe healthy lymphocytes.
2) The trend in your WBC before and after your inplants were done looks similar, so it could be that your lymphocyte count was already on the increase before your inplant surgery. Without flow cytometry tests reporting the number of monoclonal B-lymphocytes, you really can't say. That's because even your lymphocyte count is made up of healthy T, (both helper and cytokine types), B and NK lymphocytes, plus clonal B-cells, i.e. CLL cells. All of these can move up and down in quantity over time.
Importantly, as you said, thanks to many wonderful researchers, CLL is becoming more curable. It will also be interesting to many to see how your WBC changed over time and how high it was when you started Imbruvica. It may have peaked at well over 450 if you followed the typical pattern of an initial lymphocyte count increase for the first few months. It might take a few years to return to those early count levels, but we now have plenty of evidence about the long term efficacy of Imbruvica monotherapy treatment.
Neil
I think it's important to remember when people speak about something "causing" cancer, it's generally not a direct link like when "I fell and the impact broke a bone." In this scenario, pressure on the bone directly breaks it. The "causes for things that impact DNA/body fails to recognize defective cell, causing cancer" are a bit more intricate.
When thinking about permanent changes to our DNA that cause cancerous disease, it starts with a change that occurs that our DNA repair enzymes did not or could not repair. Our DNA gets "broken" often as we go through life, and we have repair enzymes that fix it. This occurs numerous times, on a daily basis. When our DNA enzymes fail to repair, say, a 17p deletion.....the cells now formed from THAT cell continuing to replicate are "cancerous CLL cells". So the "X potentially caused my cancer" is meaning X either interfered with DNA repair enzymes/systems, or there was so much damage to the DNA it was unable to be repaired in a timely manner, PLUS other things occurring after that. In my 17p deletion scenario, one's DNA repair enzymes not only failed to "fix" that defective cell", IN ADDITION, our body either failed to realize that this cell is now defective, or failed to destroy it. This is where a certain amount of "immune system is not recognizing certain cells are cancerous and attacking them" statements are coming from. Plus, unrepaired DNA damage to systems that make various enzymes & key molecules can contribute.
sciencenordic.com/biology-b...
So there are a number of "fail safes" that go awry. There are a number of things that can affect these steps, to a varying degree. Even within family members living in the same geographical area, their life experience and exposure to various cell stressors (sunlight, chemicals, amount of sleep obtained, types and quantity of food & water, emotional stress) will be different. There currently is no way to predict what combination will definitively induce disease. Or how that disease will present itself. Scientists have made inroads; we know exposure to certain chemicals can increase cancer risk, if not actually induce it even decades later (benzene being the classic known carcinogen). We have elucidated some genes associated with high risk (or the cancer itself) in a number of cancers. We are identifying the molecules that need to work correctly in the DNA repair scenario. But it's all really complicated.
yes I developed LGL after but I was told Hep C was most likely the cause but this is interesting that you were told Harvoni was the cause. It has shown that Harvoni has caused Liver cancer
Rando21• in reply to
I think the staff that told me that Harvoni caused it later corrected what they had said. After talking with a few doctors I’ve since come to another conclusion as to what may have caused my CLL. In my case I only had Hep C for a few years before being cured with Harvoni. So, I don’t believe the Hep C caused my CLL as it would have needed to cause detectible CLL within like 6 years.
Not excited about the liver cancer possibility with Harvoni for sure. I think CLL may increase the chances for that as well?
• in reply toRando21
Not sure what you mean about detectable for six years but I just checked my blood tests and my lymphocytes were high way before I took harvoni. As far as harvini causing liver cancer there have been only some rare cases that claim to have gotten liver cancer from it but that’s hard to say because cirrhosis can cause liver cancer. As of April 2022, Healthline says that Harvoni, is not known to cause liver cancer or other types of cancer. In fact, treating hepatitis C with DAAs can help prevent long-term effects like liver cancer. However, there have been rare reports of liver cancer in people who have been cured of hepatitis C with Harvoni.
Rando21• in reply to
I meant that the Hep C was unlikely to have caused my CLL since the time between contracting Hep C and detecting CLL was very short, only 6 years.
I found this about the liver issue and Harvoni. Seems like I’m in the clear as far as that really rare issue is concerned.
drugs.com/medical-answers/h...
• in reply toRando21
Ok I see what you’re saying but 6 years is pretty long time to be living with Hep C. Even one year if you have a bad case of it but idk if yours was. It also depends what your numbers were. My HepC was supposedly a very mild case which is why it went unnoticed for decades. I never had elevated liver enzymes until decades later. But the leukemia could have developed right away early on. My lymphocytes were historically slightly above the high threshold & my absolute lymphocytes numbers were normal up until a few years ago so nobody thought to check for a rare blood cancer given that LGL wasn’t even discovered until 1985 and still it took years before they began to understand it. I went to an RA doctor and he did a full work up. The only thing he discovered was an autoimmune disease that no longer exists. But he didn’t think it was the cause of LGL. Unless you know you don’t have any autoimmune disease which is tied to LGL then it’s more likely Hep C gave you the LGL.
Rando21• in reply to
To my understanding it was normal to live with Hep C for decades up until some of these new treatments. I guess that was your experience. Also, my case was very mild.
But that wasn’t really even my point. To have CLL emerge in 6 years from when I initially contracted Hep C, from what I was told, really doesn’t happen. More like 10-15 years minimum.
• in reply toRando21
Hmm 🤔 possibly I’ve only asked my hematologist and he said it’s possible but doesn’t know for sure.
I’ve known many people who list livers and had transplants as a result of Hep C. Those with mild cases like us were ok however many who had more severe cases actually did chemotherapy treatments which were brutal on the system and ended up killing many people.
In fact when I first found out I had it I was investigating the treatments and my doctor stopped me when she said to me “you do those treatments and you’ll definitely die”. And then she told me that the antiviral treatment was coming out soon and a year later it did.
I ended up doing the 90 day treatment. How many days did you do yours for?
Rando21• in reply to
I don’t remember exactly. I think 8 weeks? I know it wasn’t the longer option.
I do have a theory as to what caused my CLL or at least contributed significantly. I think it’s an interesting possibility. Tell me what you think. I grew up on a water bed. I slept on a waterbed for nearly 18 years. I would often pop the bed and can still remember the smell of the chemicals in the bed water. Some of the cleaning products used ethylene oxide which is a known carcinogen. Additionally, I often patched the bed with adhesives and the bed itself was made of some synthetic that was likely to be off gassing. It may seem like it doesn't matter but 8 hours a night while growing up and the time spend in my room over the corse of 18 years. I dunno to me it seems like a possible contributing factor at least.
• in reply toRando21
It’s possible - CLL & LGL leukemia are different though and I see that although it’s uncertain what causes CLL it does list Chemical exposures as a possibility : “Exposure to benzene in the workplace, herbicides, pesticides, or radon at home may increase the risk of CLL”. I was exposed to pesticides from my grandfather using it in the garden we ate a lot of vegetables from his harvests. But not sure if that caused my LGL maybe others in my family would have it too if that was the case but they don’t so I’m going with decades of Hep C as the cause.
Rando21• in reply to
This observation peaked my interest. I started looking into the old water treatments and found some contained this chemical, one of which I’m almost certain was used in my bed. It’s actually a sanitizing agent. I dunno thought this was interesting.
”Lymphoma and leukemia are the cancers most frequently reported to be associated with occupational exposure to ethylene oxide. Stomach and breast cancers may also be associated with ethylene oxide exposure”
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